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.
Social Isolation Is Serious
Because of these changes that we have to make – like leaving in the middle of something 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.
If you ask someone how they slept last night, chances are you’ll get one of two answers – “fantastic” or “not at all”. It seems like a lot of people have trouble getting a good night’s sleep. The reasons can be many – having young children, an uncomfortable bed, too hot, too cold, too much stress…the list goes on.
When you live with Chronic Pain, it’s an entirely different story. Pain is usually the main factor in keeping us awake, and the likelihood of a good night’s sleep is generally not to be expected. Read on to find out more about what it takes for a good night snooze.
Sleep And Your Immune System
Without sufficient sleep, your body makes fewer cytokines, a type of protein that targets infection and inflammation, effectively creating an immune response. Cytokines are both produced and released during sleep, causing a double whammy if you skimp on shut-eye. Chronic sleep loss even makes the flu vaccine less effective by reducing your body’s ability to respond.
Stock Up on Naps
To stay healthy, especially during the influenza season, get the recommended seven to eight hours of sleep a night. This will help keep your immune system in fighting shape and also protect you from other health issues including heart disease, diabetes, and obesity. If your sleep schedule is interrupted by a busy workweek or other factors, try to make up for the lost rest with naps. Taking two naps that are no longer than 30 minutes each —one in the morning and one in the afternoon—has been shown to help decrease stress and offset the negative effects that sleep deprivation has on the immune system. If you can’t swing a half-hour nap during the workday, try grabbing a 20-minute siesta on your lunch hour, and another right before dinner.
Other Healthy Tactics
Of course, there’s more to boosting your immunity and guarding against illness than getting ample sleep. It’s also important to practice smart stay-healthy strategies such as washing your hands with soap regularly, avoiding close contact with people who are obviously under the weather and talking with your doctor about getting an annual flu shot. And remember: Even if you do come down with a case of seasonal sniffles, you’ll be able to bounce back faster if your body is well rested.
11 Tips For A Better Sleep
Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.
Set a bedtime that is early enough for you to get at least 7 hours of sleep.
Don’t go to bed unless you are sleepy. If you don’t fall asleep after 20 minutes, get out of bed.
Establish a relaxing bedtime routine. Use your bed only for sleep and sex.
Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.
Limit exposure to bright light in the evenings. Turn off electronic devices at least 30 minutes before bedtime.
Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.
Exercise regularly and maintain a healthy diet.
Avoid consuming caffeine in the late afternoon or evening.
Avoid consuming alcohol before bedtime.
Reduce your fluid intake before bedtime.
Take your medications on a regular basis. If you take sleeping meds, take them on a regular basis as directed instead of just hit and miss each night.
Having Fibromyalgia, or any Invisible Illness is hard to live with. People can’t see your pain like they can with other conditions, and we often have to put up with the platitudes of “but you don’t look sick”, or “oh, I get aches and pains all the time too”. Hearing these comments over and over can lead to depression, frustration and resentment. Stress builds and makes you hurt even more, and so a vicious circle begins.
It’s time to read something more positive, words that you can cling to and keep close at heart. These quotes are from a variety of different people who seem to have a handle on anxiety and stress. I hope their words help you. Thanks to Live Purposefully Now for the list:
1. Anxiety’s like a rocking chair. It gives you something to do, but it doesn’t get you very far. Jodi Picoult
2. You don’t have to control your thoughts. You just have to stop letting them control you. Dan Millman
3. Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength. Charles Spurgeon
4. I promise you nothing is as chaotic as it seems. Nothing is worth diminishing your health. Nothing is worth poisoning yourself into stress, anxiety, and fear. Steve Maraboli
5. You can’t always control what goes on outside. But you can always control what goes on inside. Wayne Dyer
6. When you change the way you look at life you literally shape a different life for yourself. Elle Sommer
7. I just give myself permission to suck. I find this hugely liberating. John Green
8. Stress is an ignorant state. It believes everything is an emergency. Natalie Goldberg
9. Don’t try to force anything. Let life be a deep let-go. God opens millions of flowers every day without forcing their buds. Osho
10. Breath is the power behind all things…. I breathe in and know that good things will happen. Tao Porchon-Lynch
11. You must learn to let go. Release the stress. You were never in control anyway.Steve Maraboli
12. If the problem can be solved why worry? If the problem cannot be solved worrying will do you no good. Shantideva
13. The key to reducing anxiety is to let each situation be what it is, instead of what you think it should be. Elle Sommer
14. One of the symptoms of an approaching nervous breakdown is the belief that one’s work is terribly important. Bertrand Russell
15. Many a calm river begins as a turbulent waterfall, yet none hurtles and foams all the way to the sea. Mikhail Lermontov
16. The greatest weapon against stress is our ability to choose one thought over another. William James
17. Stress is the trash of modern life we all generate it but if you don’t dispose of it properly, it will pile up and overtake your life. Danzae Pace
18. Rule number one is, don’t sweat the small stuff. Rule number two is, it’s all small stuff. Robert Eliot
19. Today I refuse to stress myself out about things I cannot control or change. Anonymous
20. If you are distressed by anything external, the pain is not due to the thing itself but to your own estimate of it; and this you have the power to revoke at any moment. Marcus Aurelius
Living A Stress-Free Life
Re-examine Your Values
Or examine them for the first time. Your values will always make it clear to you what you want in life.
Once you are clear on your values, you can begin to identify the things you could do away with. Those things will probably be your stressors, so this tip helps to clear your mind and prepare for the changes ahead.
You can’t begin to live stress-free if you can’t forgive yourself. If there are issues from your past you haven’t dealt with, you are likely to be filled with stress over them. Living with regrets is also stressful.
Life is meant to be enjoyed. And it’s a journey, not a destination. Just because you took a detour to the wrong side doesn’t mean you can’t find your way back to the right path. Work toward becoming a better person. Let your mistakes be life lessons. Everyone makes mistakes, remember that. And put the past in the past where it belongs.
This goes hand in hand with forgiving yourself. Just as it’s important to forgive yourself, it’s equally important that you forgive others for the wrongs they’ve done to you.
Others are just as worthy of forgiveness as you are. Forgiving others frees you more than it frees them and the extra baggage you’ve been carrying around is liberating to let go of as well.
Accept Your Life Just The Way It Is
No one is promised a perfect life. Though we all strive to achieve happiness and contentment in our lives, it doesn’t always turn out that way. The key to acceptance is to accept it just the way it is. Accepting it doesn’t mean settling in it. It means consciously acknowledging it instead of running away from it in denial.
Whatever your life circumstances, accept them. Only when you accept your life circumstances can you begin to take steps to improve them. This will definitely help you to live stress-free.
Think The Best Of Every Situation
Whatever the situation is that you’re going through, be it divorce, disease, failing at school, getting fired from work, etc., you can still find some good in it. I know that sounds simplistic, but there are always reasons to be grateful as long as you don’t play the victim and accept the circumstances for what they are.
You still have the power to change things. That power is what leads to a stress-free life. Acceptance can be liberating.
Be Present In Everything You Do
It’s easy to be preoccupied with other things while we are doing one thing, and this elevates stress. If you are washing dishes, but now you are worried about paying the bills and the kids’ tuition, and the mortgage, then stress is bound to overwhelm you.
Instead, learn to be present in what you are doing. You can teach yourself to think of only washing the dishes. You can compartmentalize everything so that you don’t let your stressors dominate all your time. This way you don’t let stress prevent you from being productive.
Declutter Your Life
And do this in every way imaginable if you want to live stress-free. People have a lot of stress because they have a lot of material, mental, emotional, financial, intellectual and social clutter. If only they could declutter their lives.
You don’t need all those other things outside of your basic needs. Stop hoarding stuff because managing it means stress. Simplify your life in the best possible way.
Don’t underestimate the significance of gratitude if you want to live stress-free. Most people can’t get out of stress because instead of being grateful for the good things in their lives, they are busy whining about the bad things in their lives.
Sometimes they whine even about the good things because they’ve become blind to how lucky they are. If you are like that, it’s time to change. Gratitude is the best antidote for stress, so take a spoonful and live stress-free.
When you live with Chronic Pain and Chronic Fatigue, travelling for business and/or pleasure can become a real challenge. In the course of my volunteer work, I sit on 4 different committees and one working group, and of those, 2 of them require travel from my home in Langford, BC (just outside of Victoria) to Vancouver on the Mainland. It’s a short flight, only 30 minutes from runway to runway, but with everything that goes into it, it can end up being quite exhausting by the time the trip is over.
On my most recent trip to Vancouver, I came down with what was either food poisoning or a severe case of gastroenteritis on Thursday evening before my all day Friday meeting. I was in the bathroom every hour all night long, plus I had the stomach cramps and nausea, along with feeling extremely cold yet having the sweats. I haven’t been that sick in years!!! On top of all that, I had a flare-up of my Trigeminal Neuralgia which combined to make me a very, VERY miserable girl.
I survived to the next day, made it through the meeting still having the shakes and sweating and still with facial pain from the TN, and all I wanted to do was get home as soon as possible. I arrived at the airport for my 7pm flight, only to find out it had been cancelled!! The next flight was for 8pm so I had no choice but to wait. Then there came notice of a delay for that flight. Then another delay and another delay and still ANOTHER delay. In total, there were five delays for the flight and I didn’t get home until just before 11pm by the time it was all said and done.
I was so wiped out from being sick, from the travel, the intensity of the meeting…just everything. I went to bed immediately and didn’t wake up (except for pee breaks) until Sunday at 8am. I completely slept through Saturday!!
Travel, in general, is not easy when you have Chronic Pain and being sick makes it worse. If you do have to travel, for business or pleasure, I’ve gathered a few tips to help make YOUR travels a bit easier the next time you’re flying or on the road:
Keep a small, lightweight, hands-free bag with essentials handy and check your main bag if traveling by air.
Ask, “How accessible are handicapped accommodations?”
Pack for all temperatures and environmental fluctuations. I get hot easily, so I pack clothing that is easy to layer. With careful coordination, I can make many outfits from fewer articles of clothing and lessen the load.
Make your bed as close to your bed at home as possible. Ask for extra pillows or blankets. (I always check the closet when I first arrive for these).
Stay as close to your usual routine as possible, but also adjust with the local time to avoid jetlag.
Throw in an extra pair of reading and sunglasses from the dollar store so if you lose them, you don’t mind so much. A book light comes in handy and serves as a light that is easy to access when your unfamiliar hotel room is dark.
Carry a medical letter or a medical history summary that includes diagnoses with your physician’s contact information. This letter is handy and often available from your doctor. Ask if they might have such a thing or create your own.
If you are confined to an airplane seat, keep blood and lymph moving by flexing and relaxing your joints every 20 to 30 minutes. Compression socks are helpful for circulation too.
Avoid alcohol and stay hydrated. Dehydration stresses the body as a whole.
Carry a healthy snack bag with fresh fruit and non-perishable foods, like protein bars, in case of a delay.
Dress for comfort in loose non-restrictive clothing and a pair of comfortable fail-safe shoes. This is not the time to try out those new sandals you bought!!
Make sure your plane, train, or bus is on time before leaving home – sign up for notification alerts when offered.
Travel comes with challenges for everyone, but especially those of us who live with conditions that cause chronic pain. But, if we respect our limitations and listen to what our body tells us, we can enjoy our time away from home.
If you are a patient with Fibromyalgia or another Invisible Illness, chances are you’ve felt depressed at some point. Depression is prominent in fibromyalgia patients with the risk of getting depressive symptoms at least once being about 90% and getting major depressive disorder (MDD) being about 62–86% in fibromyalgia patients*.By following an appropriate fibromyalgia treatment plan and getting the support of family and friends, you can take control of your fibromyalgia. You can also get control over your symptoms of depression and improve your quality of life.
What Is Depression?
Sadness is a normal reaction to loss or life’s struggles. Depression surpasses sadness and becomes a problem that affects your whole life. People who are depressed commonly experience:
Loss of interest in activities you used to enjoy
weight loss or gain
thoughts about death
Irritability and guilt
Anxiety that won’t go away
Insecurity and a feeling of helplessness
difficulty concentrating or making decisions
These thoughts, physical changes, and feelings interfere with daily life.
What Is the Link Between Fibromyalgia and Depression?
The stress from fibromyalgia’s pain and fatigue can cause anxiety and social isolation. The chronic deep muscle and tender point pain can result in less activity. That causes you to become more withdrawn and can also lead to depression. It is also possible that anxiety and depression are part of fibromyalgia, just like the pain.
Depression and fibromyalgia can greatly interfere with the way you manage your activities at home or at work. So it is important to openly discuss any symptoms of depression you have with your doctors.
Does Stress Increase Depression With Fibromyalgia?
The stress of living with chronic pain and relentless fatigue can put a person into “overload.” This results in near catastrophic levels of nervousness and anxiety. Doctors aren’t certain yet whether stress brings on Fibromyalgia or if Fibromyalgia brings on stress. All we know for certain is that it’s a vicious circle and that stress adds to problems of anger and irritability. Most patients feel their pain and fatigue worsening over time.
Is Depression Common With Invisible Illness?
Feelings of depression are common with all types of chronic pain, including headache, back and neck pain, hip pain, shoulder pain, and the pain of fibromyalgia. For example, the prevalence of major depression in people with chronic low back pain is about three times greater than in the general population.
Continuing that vicious circle, being depressed also increases the risk of developing chronic pain. Patients describe greater disturbances because of pain and display more pain behaviours than other pain patients who are not depressed.
One of the worst things that happens is that people with chronic pain such as fibromyalgia start to isolate themselves from family and friends at a time when they often need them the most. They become more focused on their pain, which causes further withdrawal which then causes more depression and round and round it goes.
Ways to Ease Depression With Fibromyalgia
It’s important to understand that fibromyalgia is more than the deep muscle pain and tender points you feel. It encompasses everything about you — your feelings, emotions, and attitude; the way you respond to stress; and the way you communicate with others.
The good news is, though, that while there is no cure, the fibromyalgia pain and symptoms of depression can be successfully treated.
Cognitive Behavioural Therapy
One of the most effective treatments for fibromyalgia and depression is a program called cognitive behavioural therapy (CBT). CBT is a type of treatment that helps patients understand the thoughts and feelings that influence behaviours. CBT is commonly used to treat a wide range of disorders, including depression, and anxiety.
Cognitive behaviour therapy is generally short-term and focused on helping clients deal with a very specific problem. During the course of treatment, people learn how to identify and change destructive or disturbing thought patterns that have a negative influence on behaviour and emotions.
This negative self-talk can fuel a sense that negative experiences are catastrophes, which further increases stress, anxiety, depression, and pain.
Your doctor can refer you to a CBT program offered individually (often online) or in a group format.
Mindfulness-Based Stress Reduction (MBSR)
This program, which teaches mindfulness to patients, had demonstrated remarkable benefits for reducing fibromyalgia pain as well as anxiety and depression. “Mindfulness is an awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally,” according to Jon Kabat-Zinn, a pioneer of mindfulness in medicine.
Being mindful means intentionally being present with your breath, thoughts, feelings, and sensations. You can practice mindfulness through meditation, body scans, mindful eating, or mindful movements like yoga or Tai Chi.
You can find an MBSR program offered in your community through your doctor.
Music for Pain Management
Music has a powerful effect on the mind – listening to music is associated with the release of dopamine, a feel-good neurotransmitter that is known to have a role in the body’s natural pain-relieving mechanisms. It also produces relaxation, which in turn can help to lift your mood and ease your pain.
A study published in Science Daily found that, when people with chronic pain listen to music for an hour a day, they experienced up to a 21 per cent reduction in pain and a 25 per cent reduction in depression. Additionally, they found that listening to music made participants feel less disabled by their condition and more in control of their pain.
Music that you find relaxing is likely to be the most effective for improving mood and pain levels. However, music doesn’t have to be soft and soothing to be effective. Whatever type of music makes you happy is the best kind to listen to, so go ahead and turn on Rock & Roll, Grunge, Heavy Metal or Classical…it’s your choice.
Medication does have a role in treating depression in people living with Fibromyalgia or other Invisible Illnesses. Only your doctor can know for sure if you require medication so it’s important you seek medical care if you are experiencing the symptoms of depression. The goal is to help you feel better and often a short course of medication might be an option in conjunction with one of the above treatment options as well.
As you can see, depression can wreak havoc on the body already plagued by Fibromyalgia. Don’t let it isolate you from your family and friends. If you’re experiencing signs of depression, seek help. The sooner you start, the better the chances are of decreasing your pain and suffering and getting you back on track to better health.
It’s time to meet my next guest, the wonderful Jennifer Purrvis!
Introduce Yourself and tell us a bit about you….
My name is Jen. I grew up in the Houston area but live in Wellington, New Zealand. I moved to New Zealand when I was 19 and have lived in various areas in NZ but have kicked around in the capital city for 11 years. I have one daughter who will be 14 and 4 cats. I am single but formerly married. I’m a terrible cook but enjoy baking. I’m currently studying towards a Bachelor of Science in Psychology and hope to get admitted into a Masters of Forensic Psychology programme once I complete my undergraduate. I run Chronic Illness Cat, mostly on Facebook, but you’ll have seen us on other platforms too. Muffin is a real cat, who lives in France, but her dad is from Nelson in New Zealand. He sometimes comes back for a visit but we’ve never met up, though we should.
Chronic Illnesses/Disabilities I have…
I grew up a child of anxiety and depression. After I had my daughter I became severely agoraphobic and was diagnosed with a mood disorder, not otherwise specified. This would finally be diagnosed as Bipolar Disorder in 2018. I also have PMDD.In 2007, I nearly lost my life after a doctor bagged an IV of an antibiotic I was orange banded as allergic to. I saw a huge white light. I felt a shock hit my body and felt fire ants start biting all over my body. That’s really all I remember. When I woke up I couldn’t unfold my arms or bear weight on my body. It would take years to regain my independence, my tolerance, my sanity. I was so, so angry about the disability attacking me, the pain I was constantly fighting and everything I was losing. It’s been nearly 12 years and things are so much better. I’m so much happier and freer and independent. However, in the last year, I’ve been diagnosed with Autoimmune Urticaria and I’m now on higher dose Cyclosporine. I’ve started to feel those dark shadows creeping in again. The pain is returning, so is the tiredness, reliance on drugs for pain, and I worry about stepping so far back.
My symptoms conditions began…
As a kid. I think I’ve always had an autoimmune disease. I first started getting fevers when I was 2 weeks old. I was just always sick. Always tired. I caught mono twice as a teen. I had chicken pox so severe as a kid I had them down my throat. I know I was severely depressed at 12. I had sleeping issues as a teen. I had coping methods that were not safe or would be suggested. I had a devastating eating disorder.
The night I got so sick back in 2007 was a normal night. I felt slightly off and started feeling worse and worse. I asked to go to the Emergency Department. I expected to have an infection but I didn’t expect to find myself fighting for my life. It turns out I had suspected sepsis. The bag of antibiotics was important, but so was understanding the importance of orange banding of patient allergies.
Fast Forward to the present and the first few days of realising I was getting sick again were terrifying. I knew something was wrong, but I never expected it to be something so full on. The first symptom I started experiencing was itching when sweating. Whenever and wherever the sweat would touch, I would feel like a jellyfish sting and hideous itching. I put it down to being ‘dirty’. The second major symptom that developed was a reaction to showering. Wherever the water hit, another jellyfish-like sting would develop, with burning and itching. But following the itching and burning came nausea, a feeling of being overwhelmed in the head and vomiting.
I started taking antihistamines, antihistamines and h-blockers, more antihistamines and finally saw a specialist who told me that due to my previous history of trialling drugs, I was to start Cyclosporine. At first, I was really optimistic because I had 2 weeks of showering with very little symptoms. But then, as soon as it had arrived, the optimism left. All the symptoms were back.
My diagnosis process has been…
Confusing. When I was first sick in 2007, no one knew what was wrong with me. I saw specialists and doctors all the time. People had opinions from Lupus to Still’s Disease to MS to ‘just experiencing a shock’. To get better care, we sold our home and moved. I saw another specialist who told me I had Lupus and “was just being a woman about it”. I was put on every drug you could find. Nothing helped. Nothing improved.
I saw just about every rheumatologist in the capital city. No one had answers for me. In the end, I just stopped going. It wasn’t worth the money. When I started getting sick again, and the blood tests were all fine, it started feeling like deja vu all over again.
However, this time, the specialist knew that this was Autoimmune Urticaria and that I had some dermagraphica which made him feel more confident. It felt unusual that I actually had symptoms someone was familiar with. Though, he did feel there was more autoimmune going on and asked if I wanted to begin looking for that and I told him I didn’t. I just couldn’t face doing it all again.
The hardest part of living with my disability/illness is…
Not knowing if I’m ever going to live normally as other people do. Will I be able to work? Will I finish my studies? Will I ever be independent? It scares the hell out of me. What if the medicines just get worse? I can’t nap through life. These questions just go around and around my mind sometimes. Fears for my future feel almost disabling at times.
A typical day for me involves…
Waking at 6:30. If it’s my week with my daughter then I get up with her and help her get ready for school. Once she’s left for the bus, I head back to bed. If I’m not with her, I go back to sleep. I try to wake up at 6:30 regardless so as to keep a regular rhythm. Sleep is so crucial for the maintenance and care of the Bipolar person. When I wake up I have a cup of tea and run errands or study, depending on the day. It’s really important for me to keep my grades up, so studying is important.
I’ve gotten it into my head that I need to do some sort of exercise, even though I’m not supposed to change my body temperature and/or sweat. I have some hand weights and I’m looking into belly dancing on youtube. I want to stay active for my brain and I want to stay mobile. But gosh, I know I’ve lost a lot of dexterity and put on weight since I stopped going to the gym. Swimming is out, maybe yoga? Am I that cliche? Just do some yoga?
I try to eat normally but I’ve got some problems with eating and I take Seroquel at night, so that makes up for any lost calories I haven’t eaten during the day. Right now Married at First Sight Australia is on, so I’m pretty addicted to that. Otherwise, I just try to rest and study. Glamorous, right?
One thing I cannot live without is…
Hot tea. I’m thoroughly addicted to caffeine and classic Bell Tea with milk gets me through my day. I probably go through 6 to 8 tea bags a day. It’s probably the reason I actually can move. Also, probably why I don’t sleep much.
Being ill taught me…
To take nothing for granted and to be amazingly grateful for the gifts that I have. Being able to walk is tremendous. I spent 9 months on the couch. Slowly I learned to crawl, then scoot and then walk again. Amazing. Getting the energy to work in cat rescue and change litter pans and chase after cats made me forever grateful for the second chance I was given. Now I’m studying to become independent. I’ve got my brain back. I will never not be angry and horrendously filled with rage at what happened to me, but I will also never not be amazed and filled with gratitude that I am where I am today. I’m a survivor.
The advice I’d given someone newly diagnosed…
Is that life goes on. It’s different but it goes on. It’s like when the brand of your favourite chip alters things and it’s never the same but you just go on buying it all the same. You can’t pretend nothing has changed, but at the same time, you still enjoy it enough to keep buying it. Some days are going to be horrific. And you’ll cry. You’re entitled to cry. And get mad. And kick at things. But some days will be not so bad too. And hopefully, you’ll get more of those not so bad days soon enough. That’s all you can ask for. And hugs. Ask for hugs. No one will think less of you for doing so.
My support system is…
Really small. I have a really truly, true-blood ride or die best friend on the net but-not-imaginary friend who gets me and loves me and would do anything for me named Alice. She’s also on the Page. I hope one day to be able to explain to her how much she means to me. And to thank her for lifting me up on those really shitty days.
I have my ex who does a lot of practical things for me. I have my daughter who shouldn’t have to grow up so quickly. And myself. I lean on my GP, Simon, a lot. And that’s it. I do a lot of the emotional stuff myself. I’ve become a lot quieter and controlled. Well, the Abilify has made me that way. I could do with a therapist. And a boyfriend. But we’ll see.
If I had one symptom-free day…
Gosh, I’d just sleep. Nothing would hurt. I’d shower too. Wash my hair and not throw up. Go lay in the sun. And sweat. Imagine!
One positive of having a chronic illness is…
That it gives me an amazing sense of humour and fantastic charm. I can joke around with just about anyone and I relate to a large number of people going through many things. It’s given me a sense of empathy that’s lead me to psychology and wanting to care for others. I’ve always been sort of activist-y anyways, but being sick has really pushed that envelope in fighting for others to get the same rights and access, which has been super useful having a daughter with extra needs.
Thanks so much for having me. You can find me and Muffin at the links below. And me and my kitties on my personals.
It’s time for our next guest, the delightful Jill Goodpasture!
Introduce yourself and tell us a bit about you…
My name is Jill Goodpasture aka Fibroscoop. I have been writing my blog The Scoop on Fibromyalgia and Chronic Illnesses for a year now. I am a divorced mom of 2 teenage boys, 15 and 19. My oldest just left home so things have just changed around the house recently. I also have 3 furbabies and Sophie my support dog is frequently featured on the blog. She is just too stinking cute not to get on there occasionally.
Chronic illness(es)/disabilities I have…
I have Fibromyalgia, Early Degenerative Arthritis in my lower back and hips, Plantar Fasciitis, Narcolepsy, Sleep Apnea, Depression, and Anxiety.
My symptoms/condition began/My diagnosis process was…
In the spring of 2016, I started to have trouble with plantar fasciitis for a second time. I went back to the podiatrist who treated it the first time with cortisone shots. This time the shots didn’t work though. In fact, I had a inflammatory reaction to the shots and can no longer take steroids. I started seeing an Orthopedic Foot Doctor who put me in a boot for 6 months. During that time my back and hip started hurting. When the boot went away, the pain in my back and hip just got worse. When it persisted. I went to the orthopedic for my back and they said I had arthritis in my back and hips.This was Oct 2016. In about August of that fall I had begun having body aches and nerve pain in my legs. This progressed to numbness and weakness.
The Doctors did nerve tests and MRI’s and finally said there was nothing wrong and sent me to PT. Well it so happens that I had the best PT in the world. She told me that it really sounded like I had something Autoimmune going on with my body. She knew my GP and told me to go talk to him. I did and he said he thought I had Fibromyalgia and maybe MS or RA. He did a thousand blood tests and when everything came back negative he sent me to a Rheumatologist and recommended that my Neurologist do a brain MRI. The Rheumatologist diagnosed early degenerative arthritis in my lower back and hips and fibromyalgia. She ran a bunch of tests that were negative and said we would keep our eyes on and keep checking for muscle conditions based on symptoms. My Neurologist did a brain MRI and there was no sign of MS but we recheck every 6 months.
I have struggled with depression and anxiety since middle school. I have seen a therapist and been on medication for about 20 years now. I like to think I have it pretty much “under control” but anyone with depression knows that is a myth. My therapist and I have a close working relationship and do phone visits weekly, and anytime I feel overwhelmed or that the pain is too much to handle I text her and we schedule extra visits as needed.
The hardest part of living with my illness/disabilities is…
This is a tough one. I would have to say it is a toss up between seeing how it has affected my kids to the loss of the future I had all planned dreamed of for so long.
A typical day for me involves…
I generally wake up early, between 5 and 7. My son gets himself up for school so on the off chance I am able to sleep in, I can do so. When I first wake I lay in the bed and do a few stretches so that when I move to get up it won’t hurt so bad. Then I take my cpap off and put the hoses in the drawer and get up. I stand there and do a few more stretches. I make my bed up and set up a bunch of pillows to recline against and turn on my heating pads to warm up. I let the dogs out. Then I use the restroom and put my medicine bin on the bed so I won’t forget it. I make breakfast, coffee, and a big cup of Diet Dr. Pepper (my lifeblood). When everything is ready I go back to the bedroom and let the dogs in. I filled their bowls while I was in the kitchen.
I make myself comfy on the bed, turn on the morning show and eat my breakfast. Then I take my meds and supplements and do my journaling for the day. I might spend a few hours journaling if I don’t have anywhere to go. If I am going somewhere then as soon as the stiffness leaves my body I will get in the shower so I can sit on the bed for a while after to recover before the appointment. I always schedule appointments with this in mind. After the appointment or a few hours of journaling, around noon or one I will eat lunch if hungry and take a nap. This could be anywhere from one to four hours. When the kiddo gets home from soccer, thankfully transported by friends, we reheat leftovers, eat frozen dinners or he cooks usually. Then he usually does homework and talks to friends and showers til bed. I text with friends and sometimes journal or watch tv or something.
The one thing I cannot live without is…
My phone, it is my connection to the world outside my bedroom. My heating pads for pain control. I can’t decide between them.
Being ill/disabled has taught me…
Well, I think that my illness is trying to teach me patience and the ability to sit and relax, but I have not quite learned the lessons yet. I hate being in the bed all day doing nothing. I get impatient in SO many ways. I am a work in progress.
What advice would I give someone recently diagnosed…
RESEARCH and FIGHT. Research your disease and not just in the medical journals. Go to the blogs and the internet and read what people who have your condition have. Talk to people. You would be shocked once you start telling people how many people you know will have the same condition. Once you are armed with information then you fight. You fight with the doctors and the insurance companies and make sure you get the diagnoses, treatments, and medicines you need to get better.
My support system is…
My mother, my two kids, my friend Lori, and my ex-husband all provide supports in different ways. My best friend Traci has been there more times than I can count. My biggest support is my therapist who has went above and beyond making herself available by phone 24/7 to help when I am in pain or depressed or having major anxiety or whatever I need.
If I had one day symptom/disability-free I would…
Be on the go from sun up to sun down. I would do something fun with my boys. I would go kayaking with my best friend. Go out to eat anywhere I want. Go see a movie. Just go, go, go. Like before I got sick.
One positive of having a chronic illness/disability is…
Hmmm…. This question is a tough one for me. I honestly cannot come up with a positive at this point. Maybe I will one day but right now in this journey I cannot.
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
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?
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.
How Can You Start?
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.
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.
One of the many conditions I live with is called Gastroparesis. Gastroparesis means paralysis of the muscles of the stomach. Gastroparesis results in delayed emptying of food from the stomach into the small intestine. It can be minor or quite severe; in my case, I have a moderate degree of paralysis, and the food sits for 2-3 days before being processed further in the digestive system.
I wasn’t aware there was a problem at first as the usual signs of Gastroparesis are nausea and vomiting. I didn’t suffer from either of those, but I did experience a lot of bloating. It felt like whatever I ate just sat there in my belly forever.
Rare conditions such as amyloidosis (deposits of protein fibres in tissues and organs) and scleroderma (a connective tissue disorder that affects the skin, blood vessels, skeletal muscles, and internal organs)
There are many symptoms of gastroparesis, including:
Heartburn or GERD
Vomiting undigested food
Feeling full quickly when eating
Poor appetite and weight loss
Poor blood sugar control
Some of the complications of gastroparesis include:
Food that stays in the stomach too long can ferment, which can lead to the growth of bacteria.
Food in the stomach can harden into a solid collection, called a bezoar. Bezoars can cause obstructions in the stomach that keep food from passing into the small intestine.
People who have both diabetes and gastroparesis may have more difficulty because blood sugar levels rise when the food finally leaves the stomach and enters the small intestine, making blood sugar control more of a challenge.
HOW DO THEY TEST FOR GASTROPARESIS
To diagnose gastroparesis, your doctor will review your symptoms and medical history. He or she will also give you a physical exam and may order certain blood tests, including blood sugar levels. Other tests used to diagnose and evaluate gastroparesis may include:
Barium X-ray: You drink a liquid (barium), which coats the esophagus, stomach, and small intestine and shows up on X-ray. This test is also known as an upper GI (gastrointestinal) series or a barium swallow.
Radioisotope gastric-emptying scan (gastric scintigraphy): You eat food that contains a very small amount of radioisotope (a radioactive substance), then lie under a scanning machine; if the scan shows that more than 10% of food is still in your stomach 4 hours after eating, you are diagnosed with gastroparesis.
Gastric manometry: A thin tube that is passed through your mouth and into the stomach measures the stomach’s electrical and muscular activity to determine the rate of digestion.
Electrogastrography: This test measures electrical activity in the stomach using electrodes placed on the skin.
The smart pill: This is a small electronic device that is swallowed. It sends back information about how fast it is travelling as it moves through the digestive system.
Ultrasound: This is an imaging test that uses sound waves to create pictures of body organs. Your doctor may use ultrasound to eliminate other diseases.
Upper endoscopy: This procedure involves passing a thin tube (endoscope) down the esophagus to examine the lining of the stomach.
I underwent the Radioisotope gastric-emptying scan. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die.
DAY OF TEST
On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of the sandwich, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket.
The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!
The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked my Doctor if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try to exercise a bit more.
If you’re experiencing symptoms of Gastroparesis, please make an appointment to see your family doctor as soon as possible. There are treatments available and you won’t have to put up with the suffering. Thanks for reading and remember…