Taking A Hiatus (and this is not an April Fool’s joke)

Dear Readers,

I will be taking a short hiatus from blogging as I am dealing with some issues related to my Bipolar Disorder. I have been in a BD depression for several weeks now and have had some days so bad, I considered suicide.

The main issue is that I need to change my medications again as my current regiment has stopped working. I have been living with debilitating brain zaps that feel like an electrical current zipping through my brain. These leave me feeling dizzy and disoriented, and being on the computer is difficult during those times.

I will be back!! I refuse to let this defeat me, but I do need to take some time away until I have my BD back under control. It’s hard enough living with the physical pain of Fibromyalgia, Osteoarthritis, D.I.S.H., and more, but adding the mental health burden has become too much.

Thank you for your loyalty. Comments are appreciated.

Pamela

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Dental Care and Chronic Illness

I am terrified of the dentist!!! I have a wonderful care provider who is gentle and kind but having to go see him, even for a cleaning, requires medication for anxiety. I was there recently for a cleaning, the right side one week and the left side the next

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Here I am, high on Ativan, with my warm blankie and a bolster under my knees for comfort. You can see my look of trepidation!

And now to work!

Dental Care and Chronic Pain

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Despite my fear, I do this because it’s good for my health. It can be painful in several ways, though. It reminded me how even “normal” things like the dentist aren’t easy when you live with Chronic Pain.

Here are a few tips to make your next visit easier. 

General Thoughts

Get comfy!

Ask for a blanket and something for under your knees to help you feel more comfortable in the chair. Most dental offices are happy to provide these items. If there are headsets available, use one, or bring your own music to help keep you distracted. 

Use sedation if necessary. 

I use Ativan to help relieve my anxiety and it works wonders. It helps me stay relaxed during the visit and then conveniently helps me forget the visit when it’s over. You do need someone to drive you there and back again, but that’s a small price to pay for not being stressed out!

Keep regular appointments

By going for regular appointments, you lessen the amount of work that needs to be done at each cleaning and you catch any other problems sooner rather than later. Follow the schedule set by your dentist. 

Maintain your oral health at home

Take care of your oral health at home with regular brushing, using a brush designed for your requirements (soft or medium bristles, spinning or regular, etc.). Use mouthwash to help protect your teeth and if you suffer from dry mouth (often a problem for those who live with Sjogren’s Syndrome), use a product designed to keep your mouth moist. 

Floss your teeth with every brushing. It’s important to remove plaque that builds up and flossing is the best way of controlling this. 

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Limit Starchy and Sugary food and drinks

These items can lead to decay so it’s important that you limit them or use them in moderation to preserve your dental health. 

Talk to your dentist about mouth pain

If you are experiencing any type of mouth or jaw pain, talk to your dentist to see if you are developing TMJ (temporomandibular joint). This painful condition can be treated in various ways including medication, a mouth guard or possibly surgery. 

Be Aware Of Periodontal Disease

Periodontal disease can have serious effects on your health. If you notice that you have any of the symptoms of gum disease, call your doctor or dentist.

  • Red, swollen, or tender gums.
  • Bleeding when brushing or flossing.
  • Gums that are pulling away from the teeth.
  • Sores or colored patches in the mouth.
  • Persistent bad breath or a bad taste in your mouth.

Special Health Considerations*

Diabetes

Diabetes is a disease that affects your body’s ability to process sugar. It can be managed with treatment. Left untreated, it can cause many kinds of problems, including some in your mouth. These include:

  • Less saliva. This can make your mouth feel very dry.
  • More cavities. Saliva is needed to protect your teeth from cavities.
  • Gum disease. Your gums can become inflamed and bleed.
  • Slow healing. Cold sores or cuts in your mouth may take longer to heal.
  • Infections. You are more likely to get an infection in your mouth.

If you have poor oral health, you are more likely to get diabetes. Gum disease is an infection. Infections cause blood sugar to rise. If you have gum disease and don’t treat it, your blood sugar could increase. This can raise your risk of developing diabetes.

Cardiovascular problems

Your mouth contains hundreds of different kinds of bacteria. A healthy mouth has the ability to fight off the bad bacteria that cause disease. But when you have gum disease, an infection, or another problem in your mouth, you lose that ability to fight off those germs.

Many studies show an association between gum disease (also called periodontal disease) and cardiovascular disease. The bacteria in your mouth can cause certain types of infection and inflammation. This research suggests that heart disease, clogged arteries, and even stroke could be related to these types.

Another cardiovascular condition linked to oral health is endocarditis. This is an infection in your heart. It is usually caused by bacteria in the bloodstream that attach to weakened areas of the heart. These bacteria could come from your mouth, if your mouth’s normal defenses are down.

Cancer

More than one-third of cancer patients experience problems with their mouth. Cancer and its treatment methods can weaken the body’s immune system. This makes you more likely to get an infection, especially if you have unhealthy gums. They also can cause side effects that affect your mouth. These include:

  • Mouth sores
  • Dry mouth
  • Sensitive gums
  • Jaw pain

HIV/AIDS

HIV and AIDS also weaken your immune system. That puts you more at risk of infections or other oral problems. It is common for people with HIV/AIDS to develop issues in their mouths, including:

  • Mouth sores
  • Dry mouth
  • Thrush (yeast infection of the mouth)
  • White lesions on the tongue
  • Serious gum disease and infection
  • Mouth ulcers

Osteoporosis

Osteoporosis causes your bones to become weaker and more brittle. This could lead to bone loss in your teeth. You could eventually lose teeth because as they become weak and break. In addition, some medicines that treat osteoporosis can cause problems in the bones of the jaw.

Sexually transmitted infections

A number of different sexually transmitted infections (STIs) can cause symptoms in your mouth. These include:

  • HPV (human papillomavirus) – Some strains can cause warts in the mouth or throat. Other strains can cause head and neck cancers. These can be hard to detect. They usually develop at the base of the tongue, the tonsils, or the back of the throat.
  • Herpes – Herpes simplex virus type 1 causes cold sores and other mouth lesions. Type 2 usually causes blisters in the genitals. But both types can be passed between the genitals and mouth. So type 2 could also cause painful blisters in or around the mouth.
  • Gonorrhea – This bacterial infection can cause soreness and burning in your throat. Sometimes you may see white spots in your mouth, as well.
  • Syphilis – In its primary (first) stage, you may get sores (chancres) on your lips, tongue, or other places inside your mouth. The sores may go away, even if left untreated. But you will still have the infection and can spread it.

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Preterm birth

Severe gum disease has been linked to preterm labor and low birth weight in babies. Research suggests that oral bacteria can affect the placenta and interfere with the growth and development of the baby. It also shows that a severe oral infection could trigger labor too early. This could cause the baby to be born prematurely.

Hip Replacement

It is often advised that anyone who has had a hip replacement undergo a course of antibiotics prior to having dental work done. This is to prevent bacteria from entering the blood stream, which can cause problems such as infection with your hip replacement. Talk to your dentist to see what they advise. 

Conclusion

Oral Health Care is important for everyone, but is especially critical if you live with Chronic Illness. See your dentist as recommended and don’t be afraid to call if you notice problems. If you are someone like myself who has a fear of the dentist, ask about solutions such as Ativan, or IV Sedation to make your appointment easier. Don’t let fear put you off from having the mouth and smile of your dreams! Remember…

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Domestic Violence – It Affects So Many

****Trigger Warning: This post contains depictions of violence against women.

I’m writing about a difficult and personal subject today. Domestic Violence is rampant in North America, and around the world and while I could write a full book on the subject, I want to address it in the context of my own personal story – that of a person who also lived with Chronic Pain.

The Story

I met Dallas on Christmas Day of 1979 when I was 17 and he was 34. I was instantly smitten with him and he was a charmer who got what he wanted when he wanted it. I was delighted his attentions fell on me because I was lonely and on my own – hitchhiking my way around the US and far from any family or friends.

At first, I didn’t realize that Dallas was also a pathological liar. His natural ability to talk to anyone about anything and sound so convincing, plus his good looks had instantly blinded me to anything that could knock him off the pedestal I had placed him on. Oh sure, some things didn’t really “click” with me and he often told the same stories to people that built him up, but I didn’t really think about it.

I learned very quickly that Dallas was also a jealous man and didn’t like other men paying attention to me – especially when they talked to me. We were both traveling the country now, with no set plans in place, and of course he didn’t have a job (a very common scenario as I would soon figure out), but he was good at getting things from people and so we traipsed around, talking about “settling down” and heading to whatever destination would be best for Dallas to come up with a plan. That involved talking to people – or rather, him talking and me trying to make myself invisible.

The first time he hit me was after we had been sitting in a bar on the ground floor of the truck stop we were staying at. He had gone back to our room for something and when he came back, I was chatting to a gentleman next to me, who had literally just asked: “so how are you tonight”? Dallas grabbed me by the arm, dragged me to our room and then started screaming at me about being unfaithful. He backhanded me so hard, I fell across the bed and onto the floor. He yanked me up by my hair and hit me again and I just took it, I was so shocked. It was the first time of many this happened.

But I stayed. I had been living with Chronic Pain for a couple of years at this point in my life and when he wasn’t in a jealous mood, Dallas was so loving and considerate of me. He kept promising to find us a place and get a job and every few months that would happen. We’d settle somewhere, he’d start working and then do something stupid like write some bad checks or shoplift (or outright steal things from people), and we’d have to pack up and leave town, like regular thieves in the night.

Somehow, over time, this pattern became my fault though. If I WASN’T always in pain, we could just travel around the country – that was his theory. He wanted to be a truck driver, but had lost his license so wasn’t able to drive. He resented me for “holding him back from his dreams,” though I’m not sure how he actually reconciled those thoughts. What was apparent was that everything that went wrong was somehow my fault.

One night, while he was in a rage about life not turning out to be fair, he locked me outside of the wee trailer we staying at, in the middle of the night, while I was naked. It was pouring rain, there were no neighbours nearby (we were living out of town) and it was cold. I pounded on the door, but he wouldn’t let me in, and I finally was forced to hide out in the shed on the property, wrapped in a mouldy blanket I found.

The next morning, he acted like nothing had happened. He never apologised, not in words, but sometimes, he would treat me with kid gloves. I never knew from day to day, or even hour to hour, which version of Dallas I was going to get.

I spent 3 years with this man. At one point, he left me for another woman we had met after he completed a 3-month prison stint for a Parole Violation. I returned home to Canada, worked to save up some money and went back to the US to find him. I was that in love and desperate to be with him. So sad when I think about it now. I even ended up pregnant, until a fight with him turned physical and he beat me badly enough that I lost the baby.

We made up, again…I got pregnant for the second time and ended up giving birth to a lovely little boy on Jan. 30th. This time, we were going to do things right! We found a place in Bellingham, Washington to live, and Dallas began working as a house painter. For 6 months, he actually managed to stay at the same job…I truly thought he’d turned a new leaf, with his son being the motivating factor. We still fought viciously, but he only hit me a couple of times, so I thought we could still work things out. Then I became pregnant again when our son was only 6 months old.

This time, it was different. One day, he told me he was going to Seattle for a quote on a huge painting job that could really put us in the money. He left on a Thursday, promising he’d be back on Sunday night.

He never came back.

I sat at the window of the small room we lived in, waiting all Sunday night, not wanting to admit the truth but by end of the day Monday, I had to admit he was really gone. He abandoned his son and child to be, and me, the woman who had stood by him faithfully through all the pain and beatings and lies.

It took a long time for me to recover. I moved back home to Canada, gave birth to my daughter alone and became a single mom to two wonderful kids. I dreamed about Dallas all the time – what could I have done differently to make him happy? How could I have been a better person for him, so he wouldn’t beat me? What did I do that caused him to hate me so much and how could I track him down again?

I didn’t try to find him again. I did see him twice after he left – he contacted me and came to where I was, first when the kids were 1 and 2 and then again when they were 5 and 6. That was the last time I laid eyes on Dallas, and though I grieved for so many things, I had grown some self-esteem by that point and realized how much better I was on my own. I vowed I would never again be abused in any way.

Forms of Abuse

Physical

Physical abuse is probably what we think of first when we hear the word ‘abuse.’ There were always incidents of yelling and screaming at me, hitting me, pulling my hair, punching me in places that the bruises wouldn’t show and little shoves etc, in front of others to keep me under control. I learned quickly not to start conversations with people and to speak only when I was spoken to, so he didn’t get physical with me.

Mental

Mental abuse is almost harder to take than physical abuse. The bruises heal, but the words said cut deeply into the soul and you start to believe the things being said about you. I was repeatedly told I was a burden, stupid and incapable of doing the most basic things. He called me names on a constant basis, told me I was worthless and that I was lucky he let me stay with him.

Financial

Because Dallas often refused to settle down and work a steady job, money was always tight and we often didn’t know where we would eat on any given day. If we were somewhere settled, it was usually better for a bit, but when we were hitchhiking around, we were dependent on Soup Kitchens and Missions and Shelters for a meal. Sometimes I would have to prostitute myself in order for us to have money. I’m not proud of that, but I did what I needed to do in order to survive.

Security

Security abuse is rarely talked about, but it’s when you don’t have the stability of a secure place to be. We slept under overpasses and in the desert, at shelters and missions, at the homes of people Dallas would befriend in our travels…we just never knew where we would be at any given time.

It was especially difficult when I was pregnant the first two times. In addition to my Chronic Pain, I was dealing with morning sickness and cravings, and my body ached in ways it never had before. When you sleep on concrete under an overpass with just a mover’s blanket for covering, it does a number on your body.

So, what are the lessons I learned here?

The Lessons

First off, I learned that nothing I could have done would have changed Dallas. Change has to come from within and you have to want to change in order to make change happen. He didn’t see anything wrong with the way we were living except I was a constant burden to him with my chronic pain. When he wasn’t treating me with kid gloves, he was screaming and berating me.

Secondly, I learned that sometimes, people don’t show you exactly who they are right from the start. It took me a long time to accept that the real Dallas was the one who stole and lied and hit and screamed – not the one who could charm the pants off of you.

Thirdly, I learned that there are various forms of abuse and being beaten isn’t the only way that someone can hurt you. It’s especially hard to accept abuse in your life when you already live with chronic pain or illness of some type.

Fourthly, I learned that there are ways of getting out, but you have to find your own inner strength to do it. You have to stop believing the lies being told about you and realize you are worthy of better treatment. For a long time, I didn’t believe that, and I put up with the abuse because that was all I knew. When Dallas was actually loving me, he loved me so good that I could forget the nightmarish parts of our life.

It wasn’t until the next incident would happen that would put him over the edge before I’d be right back in the middle of the terror and despair and wonder why I was allowing this to happen. My self-esteem was being beaten out of me at every turn and it came to the point that I accepted I really was as stupid and worthless as he made me out to be.

Words of Advice

Does any of this sound familiar to you? You may be a victim of Domestic Violence without even realizing it, especially if your spouse isn’t physically abusing you. Financial abuse (withholding money from you), emotional abuse (berating you and calling you names) and mental abuse (separating you from family and friends, keeping you from working, etc.) are all ways that you can be abused without recognizing it at first.

If you realize that are in an abusive situation, you need a plan to get out. Don’t believe for an instant when the person says they’re going to change. They’re not and they never will. It took me 3 whole years to realize that, 3 years of being beaten and downtrodden. Even after I was finally on my own, it took time to accept that I was the innocent party in all of this.

I had a lot of guilt. You may be experiencing some guilt, as well. If only…if only I’d been a better partner. If only I’d kept my mouth shut. If only the house was cleaner or the kids were better behaved. If only I hadn’t asked for grocery money or needed tampons. The “if onlys” are so hard to deal with, but you need to accept that you are not the one who is at fault. The abuser chooses to abuse…it’s as simple as that. We all have a choice in how we handle situations and most of us choose not to hurt other people.

There are shelters and organizations that can help you if you are in an abusive situation and need to get out. It’s true that most shelters are overcrowded, but you still owe it to yourself to try them. Talk to people who run them to find out what all your options are. Start building a plan to get out, even if it can’t happen immediately. Start by calling the crisis lines in your area or any mental health organization. Here’s a list to help you get started: List of International Domestic Violence Hotlines and Advocacy Organizations

Document everything that’s going on including injuries and outward marks on your body. If you’re able to take pictures that you can safely keep (or send to someone and then delete), do so. If you can safely keep a journal, do so. If you can safely confide in one person…do so. All of this will become helpful if you decide to prosecute your abuser.

Above all, remember that there is always hope. Do what you can to minimize the violence in your situation while looking for ways to get out safely. It may not seem possible now, but don’t give up hope. Confide in someone, and be prepared to make a clean break, without going back to the abuser. You have a beautiful future ahead of you and you deserve every good thing in your life. Remember…

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Pet Therapy for Chronic Illness

Previously posted on The Zebra Pit

Fibromyalgia can be a lonely disease. Staying connected with friends and family becomes difficult when chronic pain and fatigue make it hard to get out and about like you used to. Sometimes, having a pet can make all the difference in the world!

Not only will a furry friend give you some companionship, but it turns out that pet therapy can actually be a pretty effective way of dealing with fibromyalgia pain. Here’s how it works.

What Is Pet Therapy

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Pet therapy is a guided interaction between a person and a trained animal. It also involves the animal’s handler. The purpose of pet therapy is to help someone recover from or cope with a health problem or mental disorder. Basically, it involves using specially trained animals like cats and dogs to provide comfort to people who suffer from diseases like fibromyalgia, cancer, dementia, etc. The animals provide companionship while the patient pets or plays with them, reducing the amount of stress and pain they feel.

The biggest concern when it comes to pet therapy is making sure that the animals are well-trained and vaccinated. Because pet therapy is often done in hospitals, doctors want to be sure that a dog won’t get loose and run around contaminating the area.

With that being said, pet therapy, when done by a professional, is perfectly safe and can be very effective in treating fibromyalgia pain.

What Are The Benefits Of Pet Therapy?

Pet therapy builds on the pre-existing human-animal bond. Interacting with a friendly pet can help many physical and mental issues. It can help reduce blood pressure and improve overall cardiovascular health. It can also release endorphins that produce a calming effect. This can help alleviate pain, reduce stress, and improve your overall psychological state.

How Can Pet Therapy Ease Fibromyalgia Pain?

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While the idea that simply petting a cat or dog can actually help your fibromyalgia pain seems a little far-fetched, there’s some basic science that backs it up. You see, petting an animal has been shown to cause your body to release lower levels of cortisol, which is the hormone linked to stress. And cortisol levels are directly linked to the amount of pain people with fibromyalgia feel.

And in addition to helping deal with your fibromyalgia pain, pet therapy also has other benefits. Depression and anxiety are both common among people with fibromyalgia, and it turns out that pet therapy can also help significantly with those symptoms. People who engage in pet therapy report consistently lower levels of stress and anxiety than people who don’t. There’s something about stroking a companion animal that lends a level of comfort to people who are suffering.

And taking care of an animal also helps people with fibromyalgia get more involved in daily life. Taking the animal on walks or playing with them in the park are great ways to coax yourself out of bed. And that’s especially true on days when your fibro pain makes you want to just close the curtains and go to sleep. So, a therapy animal can even be a link to the rest of the world when you have fibromyalgia.

So pet therapy can not only help you reduce your fibromyalgia pain, it can help you feel happier and less anxious.

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How Can You Start?

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Your doctor or therapist managing your treatment will administer pet therapy. A trained handler, often the pet’s owner, will take the animal to every meeting and work under your doctor or therapist’s direction to help you reach your goals. In most cases, the handlers work as volunteers. Discussion of proper pet handling is needed to ensure the safety of both the person receiving treatment and the pet.

Or if you prefer, you can also purchase your own animal that has been trained to be a therapy animal. There are lots of different breeders and trainers. And one should be able to help you find what you are looking for. A quick google search should be enough to find some in your area.

So maybe you’re the kind of person who hates having to leave their loyal pet behind. Well, getting them certified to provide therapy means that you can get comfort from them anywhere you go. And that can be a great thing when you’re suddenly struck by a fibromyalgia flare-up during your daily routine.

Animals make great companions, and it turns out that they might actually be great for treating fibromyalgia pain too. So if you’re tired of trying side-effect riddled medications, some alternative pet therapy may just be for you.

Outlook

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The success of pet therapy depends on establishing realistic goals and expectations and meeting those goals. You and your doctor or therapist will establish these goals at the beginning of your treatment. You’ll also discuss how to reach those goals and how long it will take.

Your doctor or therapist will monitor your progress and help you stay on track to meet your goals. If your progress is slower or faster than expected, they may alter your treatment plan. Remember,

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Going to the ER as a Chronic Illness Patient (and how to improve the Situation)

I want to talk about a subject that every person with Chronic Pain is familiar with and probably dreads…

Going to the Emergency Room

There are several reasons why people with Chronic Pain in particular hate going to the ER.  Here are some of the top reasons that have been shared with me over the years.

1. Fear of Being Labelled a Drug Seeker

This is perhaps the top reason most people with Chronic Pain list when it comes to the Emergency Room. Even when you live with a sure diagnosis of a medical condition, if you arrive at the ER in pain for whatever reason, you run the risk of being labelled. This is especially true if you already take narcotic pain medications to treat your condition.

You can present with symptoms entirely unrelated to your chronic illness, but doctors still question you about your reason for being there. If you happen to show up with pain for a reason that’s obvious (a broken bone for example), you still have to deal with some measures of disbelief – it’s happened to more than one person I know. In fact, one friend was asked if she had broken her hand deliberately to get drugs. Scary!

If the reason for your pain isn’t immediately obvious, your risk for being labelled increases and you may even find your treatment to be slower than others around you. Doctors seem to believe that since we already live with Chronic Pain, we can certainly manage “a bit more” without issue. This is a long-held misconception that needs to be addressed in hospitals around the world.

2. Fear of Needing More Pain Medication

You wouldn’t initially think that needing pain medication would be an issue, but when you live with Chronic Pain, you’re probably already taking a drugstore’s worth of medication to manage symptoms and side effects.

Adding more pain medication to our bodies may help in many ways, but we tend to run the risk of more side effects than other people, thus adding to our stress. I happen to be sensitive to Morphine – I have problems breathing, and get severe body twitching, nausea and itching. While all those things can be treated with additional medications, why go through all that when Fentanyl works fine?

The problem with this is when I tell doctors I can’t take morphine and the reasons why, it makes me sound like a drug seeker, saying I would like Fentanyl instead. My requirements are legitimate but it can come out sounding very suspicious. Stressful!!

3. Fear of Being Out of Our Comfort Zone

I hate to go to the Emergency Room and will do everything in my power to prevent it, even living with increased pain, because of the stress of being out of my comfort zone – my home. I know I’m going to be subjected to sounds and lights that are difficult for me to manage in the best of circumstances.

I’m going to have to wait for long periods of time to see anyone, my treatment may be delayed if the doctor has concerns about my use of Opioids for pain management (see above), and my pain levels and stress are going to rise the longer I am there. This is in addition to whatever the reason is that brought me to the ER to begin with. I’m already stressed and these added things just make the whole situation more challenging.

4. Fight or Flight Reaction

If I end up with a doctor who doesn’t believe my pain is legitimate, my adrenaline or “fight or flight” reflex becomes engaged. I suddenly find myself having to defend my original illness, along with dealing with the reason I’m there to start with. I don’t want to get into a fight with a doctor if I DO need pain meds – I want them to help me by recognizing my need is real.

For this reason, if treatment is taking a long time, some people choose to “give up” and just go home to live with more pain. This then backfires when you truly can’t handle the pain on your own, and back you go, like a yo-yo. It reduces your credibility as a patient. Unfortunately, when you are treated badly by the ER doctors, it’s hard to sit by and put up with that. Stress increases again, and with that stress comes more pain…which causes more stress.

It’s a circle of misery that could easily be handled if doctors would stop and listen to us right from the start. Too many times, we’re not given the opportunity to speak up and share what’s going on once they find out we have Chronic Pain. You could have a broken arm with bones sticking through, but as soon as doctors hear “Chronic Pain”, they seem to harbour certain assumptions about you.

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5. Wondering if My Pain IS Legitimate

When you live with Chronic Pain for whatever type of condition, there’s a good chance you’re going to have multiple symptoms of your illness. If that illness is flaring up beyond your control and you go to the Emergency Room for help, you may question yourself on whether you really need to be there.

Sure, you live with pain daily, but is this so urgent that your doctor can’t take care of it in the next day or so? Well, it’s a tough call, but I’ve always believed that if you are in enough pain to consider going to the ER, you should probably GO to the ER!!

Now is not the time to second guess yourself. For example, I once experienced chest and jaw pain that was different from anything I’d felt before. I didn’t think I was having a heart attack, but the pain was unbearable and I knew it wasn’t going to respond to heat packs or ice packs.

It turned out I was having a severe and unusual reaction to a new Diabetes drug I had just started and I was hospitalized for 3 days while a bunch of tests were run, and then to let me rest on IV’s and pain medications. In hindsight, nothing bad would have happened to me if I’d stayed home, except I’d have been in excruciating pain for days. I would have gone to see my Family Doctor asap, but I’d also have put myself in misery for days that I didn’t need to be in pain.

By following my instincts, I received top notch care and was treated legitimately like a person who was in pain and needed help.

Ways to Improve Your Emergency Room Visit

There are several things you can do in advance to help improve your visit to an Emergency Room.

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1. Make Sure You Have a Regular Family Doctor

Even if your ER visit is for something completely unrelated to your Chronic Pain, having a regular Family Physician shows that you are dealing with your health on a regular basis. This helps to legitimize yourself as someone who cares about their overall health and is doing everything they can to help themselves.

What happens if you don’t have a Family Physician? In some countries, finding a Family Doctor is next to impossible. Attending the same Walk-In Clinic or Urgent Care Centre is the next best thing you can do for yourself, along with getting your prescriptions written by the same location.

2. Try to See Your Family Doctor First

If it’s at all possible, try to see your Family Physician before going to the ER. If you can, take a letter from the doctor with you explaining his findings and recommendations. This can help to speed up service in the ER (though it doesn’t always work).

Depending on the circumstances, this shows you’re using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication.

3. Get Your Prescriptions Filled by the Same Pharmacy

One way to ensure legitimacy regarding your medications is to have them all filled at the same pharmacy. This allows doctors to do a quick search to make sure you’re not getting multiple prescriptions filled by multiple doctors.

4. Bring a List Of Your Medications with You

At a minimum, try to bring a list of your medications and dosages with you to the ER. If possible, take the actual bottles with you. This goes a long way to showing the ER doctors that you have legitimate health concerns, and that you know what you’re taking and why.

You might want to consider having a letter from your doctor on hand that outlines your Chronic condition and the treatment plan you are under. If you are going to the ER because of a problem relating to your condition, it can help to speed things up for the doctors if they know what’s been done in the past.

5. Co-operate with The ER Personnel

This may seem like common sense, but when we’re in a panic because of pain and/or injury, we tend to forget our normal sensibilities. Try not to become demanding when you get to the Emergency Room. You’re not the only one there and you have no idea what the other patients are going through.

Your pain or injury may very well be serious, but will be triaged appropriately according to the nurses. YOU might not agree with their assessment but without knowing the big picture, it’s impossible for you to say you’re the most critical person to be seen, even if you feel that way.

Work with the ER personnel, stay calm and cooperative and you’ll generally find yourself being treated respectfully by nurses and doctors who genuinely care about your health and well being.

Conversations with Emergency Room Doctors

For an excellent list of ways to communicate with the ER doctors to ensure you get quality care, this article from Practical Pain Management is a great patient resource. It provides you with things you should and shouldn’t say to make your ER visit most effective.

Speak Up!

I do a lot of Patient Advocacy volunteer work and was speaking at a conference full of doctors. I told them of being mistreated as a drug seeker at one Emergency Room I went to when the pain from my Atypical Trigeminal Neuralgia was overwhelming me. The doctors there assumed because I was in pain, pain medication is what I was looking for.

I wasn’t seeking pain meds (they wouldn’t have worked) but treatment in another form (I had the protocol written down from a specialist), so it was especially frustrating to not be heard.

One of the doctors at the conference spoke up and told me that on behalf of doctors everywhere, he apologized for that kind of treatment and said that it was unacceptable. He said that all ER personnel need to check themselves at the door before bringing in attitudes like that…his belief is that if someone presents at the ER in pain, they are there because they’re in pain. It’s up to the ER docs to determine if it’s physical or mental and how to best treat the patient, no matter what.

I was so touched by his comments…and I told him that the best thing he and everyone else in that room could do was to believe their patient. Yes, there are going to be drug seekers, but the majority of people who show up at the ER don’t want to be there, but have no choice. Believe them, listen to them and help them. It’s really that simple.

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10 Tips to Improve Your Mental Health

Previously posted on The Zebra Pit

Mental Health is a hot topic these days. More and more people are recognizing that they suffering in some way with depression, anxiety, bipolar disorder or other mental health issues.

Today I’d like to share 10 things that can help to improve your mental health. I hope you find these helpful.

1. Recognize There’s A Problem

The very first step to improving your mental health is recognizing there’s a problem. You may be feeling a sense of the blues that you can’t shake, or a generalized anxiety that you can’t control.

Perhaps you’re feeling out of control and going through severe mood swings from mania to depression. All you know for sure is that something is “off” and you need to figure out what it is. Whatever the case may be, recognizing something is wrong is the first step to making things better.

2. Ask For Help

Perhaps one of the hardest things we face in life is asking for help. We like to think we’re capable of handling whatever life throws at us, but it’s not always that simple. You may find that at work, you’re more than capable of tackling whatever you face, but at home it’s a different story. Or, perhaps you’ve faced challenges at home that seem easy, but at work, you’re struggling to find your place.

When you’re dealing with your mental health, you may already feel like you’re a failure. Asking for help could prove to be a very difficult thing to do, but if you don’t ask, you tend to stay stuck in the situation you’re finding hard to manage. Talk to your doctor about what you’re going through, or find a counselor or trusted friend that you can share your concerns with. Sometimes just the very act of sharing with someone can help you feel better without further steps.

3. Accept Help

Once you’ve asked for help, the next step is to actually accept the help that’s offered. This might mean medication for depression or Bipolar Disorder if diagnosed, or your doctor could have other recommendations such as Cognitive Behavior Therapy, Meditation, Yoga for stress, etc.

Accepting help doesn’t mean you will end up with a mental illness diagnosis. However getting a diagnosis simply means that your body may not be producing the right chemicals to help you feel the best you can. There are hundreds of diagnoses, including Depression, Schizophrenia, Narcissism, Bipolar Disorder, and more.

Basically, your mental health can be simple or complex. A doctor or counselor can help to diagnose what’s going on and offer you treatment options. There is no shame in having problems with your mental health. Mental health issues are not your fault and are no different than having a medical condition. With changing times, terminology should no longer hold the stigma it used to. We live in an age where awareness is everything and more and more people are admitting to mental illness in the hopes that we can eliminate the stigmas all together.

4. Get Active

It’s time to get active with your mental health treatment plan. Exercise is a great place to start and many doctors will encourage you to get out and do something physical to help you feel better. Biking, walking, swimming, golf, tennis…whatever you like to do is the best fit. Even 30 minutes a day of exercise can help to balance hormones, improve mood, lessen anxiety and encourage better sleep. Especially if you can do it in the sunshine!

5. Explore Medication

Your doctor may recommend that you start on an anti-depressant or other medication for your symptoms. Please realize that taking medication is not a sign of weakness…it simply means your brain isn’t producing the right chemicals and needs a boost.

I liken it to other diseases…you wouldn’t refuse medication for heart disease or a kidney problem and you wouldn’t have an issue taking something for Diabetes, so why would this be any different? If your brain isn’t creating the right chemical mix, medication is an easy way to correct the problem and bring things back into balance.

Of course ultimately, it’s your choice. Psych meds can have a range of scary side effects and it can sometimes take years to find one that will work right for you. There are also alternatives to medication use. For a list of options, click here.

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6. Cognitive Behavior Therapy

Cognitive Behavior Therapy (CBT) focuses on challenging and changing unhelpful thoughts, beliefs, attitudes and behaviors, improving your emotional response and aiding in the development of personal coping strategies that target solving current problems.

CBT rests on the idea that thoughts and perceptions influence behavior. Feeling distressed, in some cases, may distort one’s perception of reality. CBT aims to identify harmful thoughts, assess whether they are an accurate depiction of reality, and, if they are not, employ strategies to challenge and overcome them.

CBT is appropriate for people of all ages, including children, teens, and adults. Evidence has mounted that CBT can benefit numerous conditions, such as major depressive disorder, anxiety disorders, post-traumatic stress disorder, eating disorders, obsessive-compulsive disorders, and many others. Research also indicates that CBT can be delivered effectively online, in addition to face-to-face therapy sessions.

This link gives you a quick overview of what CBT is and how it works. Ask your doctor for a referral to a certified CBT professional if you think this type of therapy could be helpful for you.

7. Yoga* and Tai Chi

As discussed, exercise is a good way of helping you feel better about yourself. Some people find Yoga and/or Tai Chi to be of great benefit when they are struggling with mental health issues.

The discipline involved with following regulated steps in a slow and deliberate fashion helps to calm the mind and put the focus on your overall well-being. Feeling your muscles working together can be very soothing and the slow movements are safe for just about everyone. Mastering the various forms gives you a sense of success which can be great incentive to keep going.

*Please note: Yoga is not recommended for people with hypermobility. Thank you.

8. Nutrition

Your body needs fuel to function and good nutrition is key to feeling well physically and mentally. By following a healthy eating plan and getting plenty of fresh fruit, vegetables, whole grains and protein, you are aiding your body in running in top condition.

Caffeine may or may not fit into your life – some people find it makes them jittery, others have no problems. Try adding more water to your daily intake – it helps lubricate your brain and joints and keeps you hydrated for optimal function. Avoid sugary beverages as much as possible – they don’t add any value to your health.

9. Spiritual Practices

Being spiritual doesn’t mean being religious, but both can have a place in your life. If you are religious, you may find prayer to be of comfort while you deal with your mental health. If religion is not your thing, spirituality can come from the sense of a Higher Power, Nature, Music or other practices.

Try to engage in your Spirituality/Religion on a daily basis – you may find a time of prayer, being in nature or listening to music to be of value when done at the same time every day. Some people like to do this in the morning, when the day is fresh in front of them. Others prefer to do this at night, so they can reflect on the day.

Whatever time you choose, it’s your time to be honest with your beliefs and to honor them in a way that feels authentic to you.

10. Journaling

Many people who live with mental health issues find journaling to be of value. Being able to honestly reflect on your life without fear of others reading your words can bring great comfort. The key is to write honestly about your feelings, not worrying about recriminations and criticism.

Choose a time to journal when it’s quiet and you won’t be interrupted. Set the stage with a cup of tea or other beverage, find a quiet writing nook and let yourself go. Don’t worry about impressing yourself with perfect grammar – just let yourself go and free flow with the writing. Unless you choose to share your journal with others, this is for your eyes only.

The freedom that comes with writing can bring clarity to your life and help you recognize areas that might need improvement, which then leads to greater understanding and happiness.

A Few Final Thoughts

I hope these 10 steps help you to realize that mental health issues are important and need to be taken seriously. You deserve to feel your best and when you’re not, everything else seems to get bogged down.

By attending to your mental health, you are actually doing your physical body a favor as well, since you’re bound to feel better in all ways when you’re feeling better mentally.

Recognize the problem, ask for help and try some of the steps above and see if things improve. Your doctor is always a great place to start and counseling is almost always worthwhile. You owe it to yourself to be your best version of you. Remember,

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10 Symptoms You May Experience with Fibromyalgia

Previously posted on The Zebra Pit

Let’s start the New Year with a review of 10 Symptoms you may experience with Fibromyalgia.

Fibromyalgia is a tricky condition to live with as there are many symptoms you can experience beyond Pain and Fatigue. Here are 10 of the top symptoms you may experience and how to manage them.

Symptoms_of_fibromyalgia

Symptoms

1. Brain Fog

This is a cognitive impairment that causes problems such as temporary loss of memory, forgetting words or mixing up words, losing your train of thought, or saying things that don’t make sense. It can be frightening when it happens, as these are also signs of other conditions, such as Alzheimers Disease.

Your doctor can do some mental testing to make sure the symptoms you’re experiencing aren’t being caused by some other condition. Ways you can help yourself include keeping a notebook with you to write down important information, taking a moment to pause and collect your thoughts, and keeping a sense of humour about the situation. If you tend to panic about having this happen, laughing is a good way to keep things light while allowing you to start over with what you were saying.

2. Jaw Pain

Jaw pain in the joints on either one or both sides can be mistaken for TMJ (temporomandibular joint disfunction). Pain and swelling are the common symptoms of jaw pain along with stiffness and being unable to open the mouth without pain.

Gentle stretching exercises and muscle relaxants may be helpful in managing the pain. If only one side is affected, try chewing on the other side to relieve pain. If you hear popping or clicking, or if your jaw seems to be “out of joint”, see your dentist to rule out TMJ or other conditions.

3. Urinary Problems

If you are having difficulty with urinating, whether it’s a problem with urgency, leakage or straining, it’s good to check with your doctor to make sure there’s no underlying problem.

Having Fibromyalgia can affect the bladder and kidneys, causing the above symptoms. Some solutions include urinating on a schedule, doing Kegels, seeing a Pelvic Floor Physiotherapist, and using bladder control products for leakage issues.

4. Body Temperature

People with Fibromyalgia may have difficulty in regulating their body temperature. In my case, I can have cold skin and goosebumps, yet be sweating from overheating at the same time. It’s a very disconcerting feeling.

Things that may help include keeping a light blanket or sweater nearby for chills and a fan for when heat becomes a problem. I have found that keeping my feet warm helps with the chills and then using a fan helps ward off the sweating.

5. Weight Gain

Weight gain is often caused because of medications you may be taking for your Fibromyalgia. Even if you’re not taking prescriptions, you may find you’re still gaining weight – it’s one of the anomalies of having Fibro. The only way to lose weight is by taking in less calories than you are expending. Fad diets may work for a short period of time, but in general are unsustainable.

Following a proper eating plan from all 4 food groups is essential and exercise is as well. You may find walking helpful (consider using walking poles for extra stability) or water activities, such as Aquafit, Deep Water Workouts, or Pool Walking to be helpful.

6. Chest Pain

Chest pain can be a scary symptom of Fibromyalgia and should always be checked out by a medical professional if you experience the following:

  • Pressure, tightness, pain, or a squeezing or aching sensation in your chest or arms that may spread to your neck, jaw or back.
  • Nausea, indigestion, heartburn or abdominal pain.
  • Shortness of breath.
  • Cold sweat.
  • Fatigue.
  • Lightheadedness or sudden dizziness.

The cause of chest pain in Fibromyalgia is often because of something called Costochondritis, which is an inflammation of the cartilage around the ribs. The condition usually affects the cartilage where the upper ribs attach to the breastbone, or sternum, an area known as the costosternal joint or costosternal junction.

Treatment includes anti-inflammatory pain relievers such as Ibuprofen or Naproxen and using either heat or ice (which ever feels best for you).

7. Sleep Disorders

Pain can keep you from getting the sleep you need. You may also be experiencing Restless Leg Syndrome and not even be aware of it. Sleep Apnea is another problem that you may be facing and all of these issues can prevent you from getting the deep REM sleep that is necessary to repair the body.

Good sleep hygiene is important to follow. You may want to keep a notebook to jot down your thoughts when you wake at night to see if there is a pattern. Keep the room cool, avoid using electronics for one hour before bed, and try using a weighted blanket to see if that helps.

8. Digestive Problems

When you have Fibromyalgia, you may experience digestive disorders including nausea, vomiting, diarrhea or constipation (or occasionally both), heartburn and a general sense of feeling “unwell”.

Drinking peppermint tea can help with nausea, eating smaller more frequent meals might make a difference and trying to set up a schedule for bowel movements can help relieve discomfort. Metamucil or other Fibre supplements every day can be helpful for the bowels without resorting to laxatives.

If symptoms persist, see your doctor to rule out other potential problems.

9. Skin Problems

Itching, rashes, hives and tiny red marks can often show up when you have Fibromyalgia. Skin may become more sensitive to soaps and fragrances and you may discover that your normally dry skin has become oily or vice versa.

Use of a mild cleanser for face and body is imperative, especially ones containing oatmeal. Antihistimines are suggested when hives and itching become a problem and the tiny red marks that might show up on your skin are harmless.

If you have problems with skin rash, see your doctor who may recommend a dermatologist for further treatment.

10. Depression

Depression and Fibromyalgia may go hand in hand without you realizing you are showing signs. If you are finding yourself struggling to maintain interest in former activities, you’re isolating yourself, eating less or more than usual or have been unable to shake “the blues”, you may be experiencing Depression.

Treatment includes Cognitive Behavior Therapy (CBT) and often, medications. There is no shame to having Depression – you haven’t done anything wrong. You’re not weak, your body is showing signs of a chemical imbalance which should be treated like any other medical problem.

If you are feeling so depressed that you are suicidal, please call a hotline for help. You can find more information on hotlines here for Canada and here for the United States. In the UK, you can use this page for help.

Conclusion

There are over 60 different symptoms that relate to Fibromyalgia. These 10 are just the tip of the iceberg, but are the ones more commonly experienced.

Fibromyalgia is hard to explain

If you are experiencing something new, or if a symptom you’ve had for awhile changes, it’s always important to see your doctor, to rule out anything outside of Fibromyalgia. Better safe than sorry is certainly the key here. And remember…

Gratitude – Finding the Good in the Bad

Previously posted on The Zebra Pit

When I wrote my post An Attitude of Gratitude, I received a lot of good comments on it, both those left with the post and in other formats. I meant every word of that post and I wanted to expand on that today, and THANK my body for all it does, despite Fibromyalgia (and several other health conditions). Here are some of the reasons I have to thank my body (and my mind!)

I Have A Strong And Compassionate Heart

Physically, my heart is in tip-top shape. After experiencing some chest pain a few years ago, I was put through a battery of tests including a heart scan and an ultrasound. Everything came back showing my heart to be in excellent shape and my risk of heart attack to be at approximately 1% based on all factors in my life.  Now that’s pretty amazing when you consider all the health conditions I live with, but I trust the tests and the monitoring.

What I tend to be most concerned with when it comes to my heart is how compassionate am I? Do I care about others? Do I show it? Do I reach out when others need a hand or a shoulder to lean on? Those are the heart conditions that I worry about and I work hard to make sure I’m staying heart-healthy in this area too.

I’ve Been Blessed With Common Sense

Not many people know that I never graduated High School. I only finished with a Grade 11 education, and while I’ve taken College courses to complete a Certified Event Planning Certificate, I’ve never furthered my formal education. I was able to get a good job in a field I loved by working hard and having common sense, which I believe is something sorely lacking in many people these days.

I don’t know if common sense is something you’re born with or something you learn. I only know that it comes naturally to me. It’s intuitive, it’s part of me and I don’t struggle with it…it’s just who I am. I may not be the most well-educated person in the group, but at least I have this gift.  I’m always thinking and strategizing about scenarios and how I would handle them. I rarely panic anymore about things…I just seem to know how to get on with it. I’m eternally grateful for this ability and I don’t take it for granted.

I’m Able To Give Back To Others

Volunteering is hugely important to me. Having the ability to give back to others makes me feel good and that’s why I sit on committees and working groups, so I can make the improvements that enhance the lives of others. My involvement with Patient Voices Network was a game-changer from the first time I attended the orientation session. PVN is an organization in British Columbia that allows ordinary citizens to have a say in how health care is delivered in our province.

Through my involvement with PVN, I’ve been able to attend conferences and education sessions, sit on committees (4 of them at the moment!) and take part in surveys, including being part of a group that is actually creating a Provincial survey for release in the next year. I’ve traveled for my volunteer work, met incredible accomplished people at all levels of business and government and work alongside other Patient Partners who, like me, are out there making change happen.

I Can Spend Time with Loved Ones

Being able to spend time with my husband and kids and friends is critical to my overall wellbeing. Ray and I have a motorcycle and we love to go for rides around Vancouver Island and the Gulf Islands. When I travel with my volunteer work, I’m often able to meet with our daughter Ashley for lunch or dinner in Vancouver where she works, and this is a huge treat. Our son Troy is in Calgary and I am able to see him when I travel there to stay with a dear girlfriend Charlotte twice a year. These are great blessings to me!

I don’t have a lot of friends who live near me, but I treasure the ones I can get together with all the more, especially Lorna. My online friends play an important part in my life as well –I’d be lost without them. I belong to a few online groups who fulfill a need in me that only they could meet. My body and mind function better because of all these interactions and I tend to forget that sometimes, especially when I’m having a high pain day. I can get very reclusive, but it’s good to know that loved ones are there when I need them, just as I am there for them.

I’m Still Able To Read And Listen To Music

I consider myself lucky that none of my health conditions have taken away the deep pleasure I get from reading and from music. I love reading the life stories of others in the form of biographies and autobiographies. Great fiction warms my heart. True Crime stirs my compassion for others. Reading a good book of any genre is a total act of joy for me and to lose that ability would be heartbreaking, even with all the other options available.

The same goes for music. I don’t listen to music every day, or even that often, but when I’m in the mood for it, it completely fills my soul. My tastes are eclectic, running from Acapella to Zydeco and I’m grateful there are so many ways to be exposed to music in this digital age. The internet has been a wonderful source of entertainment in my life and I’m thankful my body allows me to enjoy the endless variety it brings.

I’m Grateful To Be Able To Blog

No matter what my body throws at me physically, I’m still able to write and for that, I have no words. Writing is very personal for me, as it’s all based on my life and what I’m going through. My thoughts and hopes and disappointments are all shared in equal value and it’s a unique feeling to expose myself like that. I don’t mind the scrutiny at all, because I do this of my own free will, but there are times I wonder if I should censor myself more or be even more open.

No matter how bad things get for me physically, I cling to the knowledge that it can get better. Yes, it might get worse, and often does, but even in the worst of my pain, when I’m writhing in bed in agony, there’s a part of me that refuses to give up or give in. That tiny stubborn piece of me that says “hold on, pain ends.”  HOPE.

It’s an honour to know that you, dear reader, are taking in my words and finding something useful. That’s something I’m grateful to my body for, too. No matter how bad things may get physically, you can’t take that away from me.


Season of Miracles

Thoughts

As we enter the Season of Miracles, I wanted to write today about something that’s been on my heart. Joy and Miracles and hope for the future.

There is so much hope that comes with Christmas and Hanukkah – the Birth of the Christ Child, the Miracle of the Oil burning for 8 days – and I want us to see that despite Chronic Illness, there can still be joy and miracles and things to look forward to.

After living with Chronic Illness for over 30 years, my list of physical ailments is long and continues to grow. I also have a mental illness to deal with which will be with me for the rest of my life.

Having Bipolar Disorder was a frightening diagnosis for me, but after finally getting it under control with the proper medications, it’s become a real non-factor in my life and I often forget that I have it.

To me, that’s a miracle.

Each year though, my physical pain gets worse, and so does my Chronic Fatigue. I struggle more with pain management and all the side effects, but I’ve also learned new tips and tricks to help deal with my days – another reason to feel hopeful.

Making Changes

In a previous post, I wrote about complementary medicine and how it can help with Chronic Pain. I am a true believer in trying new solutions for old problems and had some great feedback about this article. I hope you were able to incorporate some of these ideas, or will look at the post to give them a try.

Living with Chronic Pain can be a bittersweet encounter – bitter because of the pain and side effects and all the negative changes in your life, but sweet because there are still things to be grateful for.

Research

There is new research on the horizon for diagnosing Fibromyalgia – the work being done to develop accurate blood testing has never been more exciting, and with science on our side, things are bound to have a positive impact in our lives.

The sooner we get a true diagnosis, the sooner treatment can start.

Treatments themselves are becoming better too, now that we understand that Fibromyalgia isn’t an autoimmune disorder and that its roots lie in the nervous system and the inability to communicate properly with the brain and spinal canal regarding pain signals.

Although there haven’t been any new medications released to treat Fibro, Gabapentin is being used more commonly in conjunction with the approved medications (Savella, Cymbalta and Lyrica) with good results.

More and more patients are becoming involved in Research for their health conditions, and Clinical Trials are being held across North America on a regular basis.

For more information about clinical trials, you can sign up here at ClinicalTrials.gov to see if you qualify for studies on a variety of health issues, not just Fibromyalgia. Another good spot to try is Patients At Heart. For Canadians, this link takes you to the Health Canada Clinical Trials website.

Advocacy

Another area where I’m seeing hope and miracles is in Patient Advocacy. This is a fast growing area where Patients become involved as authorities in their lived experience and work together with Health Care Partners to make changes in how health care is delivered.

One of the largest national organizations in Advocacy is WEGO Health. WEGO Health works with Patients in a wide variety of areas, offering opportunties to share you stories and help to impact change in a number of different ways.

They highlight a number of different annual conferences that take place in North America, and provide opportunities for you to share your story and get involved in various projects.

Patient Advocacy at an organizational level is becoming extremely important as well. If you want to be involved, simply contact the health organization of your choice, and ask them how you can become a Patient Advocate.

Volunteering your time to share your health story and help others is a great way to give back, beyond simply “making a donation”. Financial help is always needed and appreciated, but you can make a real difference as well in sharing your experiences.

Volunteering

Speaking of volunteering, this is an activity that has given me the greatest joy since becoming disabled. I do volunteer work for a group in BC, Canada called the Patient Voices Network, where I act as a Patient Advocate for a variety of Health Care initiatives.

I currently sit on 5 health-related committees,. Two are with the BC Emergency Medicine Network. Another is a Surgical Quality Improvement committee and another committee is devoted to ensuring Quality Control for all the Laboratories on Vancouver Island, BC.

Finally, I am a member of the Oversight & Advisory Committee for the Patient Voices Network, a role I’ve held for 3 years now. We oversee the activities of PVN and ensure that Patients are getting opportunities to share their voices in making change in health care.

I have also recently been working on becoming a Coach for PainBC.ca, allowing me to work directly with people with Chronic Pain and helping them find solutions for situations in their lives that they require some guidance with. I expect that work to start in 2020 when my training is complete in mid-December.

These volunteer opportunities allow me to give back to the community in a variety of ways while still taking care of my health. I devote approximately 20 hours a month to all of these committees which is manageable without overdoing it.

I love the variety of experiences I get to be involved in, the people I work with (surgeons, Government officials, other patients, etc.) and the opportunity to stretch my wings and try new things beyond my day to day life.

I’ve even been sponsored to travel to various conferences and to take courses such as the San’yas Indigenous Cultural Training.

I share this with you to show you that even if your health isn’t the greatest, you can still participate in volunteering in ways that make a difference.

Another volunteer suggestion is this: if you are a crafter, find out if your local hospital has need for knitted or crocheted items and take on the challenge. Blankets, baby items and more are often for sale in the Hospital Gift Shops and you can have a real impact on someone’s life with this kind of giving.

I know I’ve been very comforted in times in the hospital when I’ve been provided with a beautifully created blanket!

Season of Hope

I trust you are getting a sense of the hope and miracles I started this post with. There is so much potential in our lives even if we are disabled by pain and our physical and/or mental illnesses.

We must let go of the old ways of thinking that our good days are behind us, and start celebrating the wonderful things we have yet to accomplish.

Think about what you’re good at and find a way to incorporate it back into your life. What makes you smile? What makes your heart skip a beat? Find a way to bring that joy back into your life and see what changes.

Pain is easier to manage when you have good things to look forward to. Fatigue seems easier to handle when you’re active and busy, both mentally and physically.

I hope this post was helpful. I appreciate your comments below and look foward to sharing a magical Season with all of you! Remember…

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Coping With Loneliness with Chronic Pain

The Problem of Loneliness

Chronic pain and Invisible Illness are difficult conditions to live with and can lead to social withdrawal and loneliness. When you get sick, not only do you have to process and deal with things like surgeries, recovery, medications, new symptoms and flare-ups but socially you may have to give up hobbies and activities you once loved, making it hard to nurture friendships and relationships with those close to you.

It’s hard for those who love you to understand why you might have to cancel plans last minute or leave during the middle of the evening. Because they’ve never experienced what you’re going through, it’s hard to have a frame of reference. Unless you’ve lived it, it’s impossible to make others understand.

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Social Isolation Is Serious

Because of these changes that we have to make – like leaving in the middle of an event or cancelling plans – we open ourselves up to feelings of social isolation, depression and anxiety and guilt.

Social isolation is defined as an occurrence when a person lacks opportunities to interact with people while loneliness is the subjective experience of distress over not having enough social relationships or enough contact with people.

It is possible for a person with a chronic illness to be socially isolated and not feel lonely and someone with a chronic illness can feel lonely, while not being socially isolated. There are several issues that people with chronic illness face that can lead to social isolation and feeling lonely:

  • Disbelief from others when you don’t have a clear diagnosis
  • Physical limitations due to pain or fatigue
  • The unpredictability of symptom onset
  • The trigger of symptoms related to noises, smells, etc.
  • Lack of a strong support system (Family and/or Friends)
  • Changes in employment or financial stability
  • Loss of hobbies and outside activities

Social isolation and feeling lonely are important health problems and should not be overlooked. The chronic illness population is at an even higher risk for social isolation and this problem should be addressed with your Doctor along with other symptoms and risk factors.

What You Can Do About It

When you are socially isolated and have feelings of loneliness, it can actually make your chronic illness worse. The longer you are experiencing isolation or loneliness, the more you start to develop feelings of shame, guilt, inadequacy, distrust and abandonment toward yourself and others. The more these feelings grow, the less likely you are to seek out real human connections.

So what can you do when you start having these feelings?

1. Recognize loneliness for what it is, and accept that you have these feelings. Self-awareness is important in making positive changes. When you catch yourself falling into old habits, you’ll be able to more quickly turn things around.

2. Use Cognitive Behaviour Therapy (CBT) to help reframe your thoughts to become more positive and open to socialization. This can be done with the help of a therapist or through online courses and over time, can be very effective.

3. Resist the temptation to isolate yourself and start forcing yourself to recognize if this is your “go-to response. Deliberately try doing the opposite of what you’re feeling – instead of retreating into watching TV, take a walk or pick up the phone and call someone. The more you resist the temptation to isolate, the easier it becomes

4. Fill your life with loving positive people who are patient and trustworthy and who truly try to understand what you are going through. They will be your encouragers and biggest support system. Remove negative people from your life…you don’t need their energy.

5. Try one new thing each week that will get you to meet new people. Try an art class, go to yoga, volunteer… anything that will get you to meet new people who like doing things that you like to do.

6. Seek out a support group for your illness. This is a great way to meet people who really do understand what you’re going through. Even an online group is fine to get started as being with like-minded people will help to engage you instead of isolating you.

7. Ask for what you need in your life. Don’t feel you’re being a burden on others…when someone asks what they can do for you to help, they genuinely want to help. Let them…give them the opportunity to be of service to you. Perhaps it’s to invite you out for coffee once a week or to go take a class together. You’ll be helping them as much as they will be helping you.

8. Consider therapy. It can help you explore any deeper issues that might be contributing to loneliness or social isolation. Therapy can also be a great accountability and skills training support to help you manage all of the difficult things you are going through in a safe way.

Remember, 

There Is Always Hope