Positive Things About Chronic Illness

Living With Chronic Illness

Note: This post contains affiliate links. I will receive a small percentage from the total purchase price at no extra cost to you.

Living with a Chronic Illness such as Fibromyalgia, Multiple Sclerosis, Lupus, Ehlers-Danlos, etc. can be a challenge. So much of your time is taken up with medical appointments, tests, daily pain and discomfort, mobility issues and more.

We sometimes forget to take time to spend on positive, “non-medical” moments. Maybe it’s because we have to look for them, rather than have them always there. Maybe it’s because we’re so tired from being ill that it’s too much effort.

I believe it’s important though, to find those good things in the day or to create moments when necessary. I’d like to share a few ideas with you today to help you fill your time with positives.

Moments

Pets

Our pets bring us so much comfort, whether you live with Chronic Pain or not. If you do live with an Illness of some sort, this is especially true. Pets seem to have a way of knowing when we need an extra cuddle or two, and they’re always there for us. I have a wonderful cat named Dorie, who loves to lay on my legs when I’m on my laptop (like right now)

Dorie my cat, sitting on my legs, and bringing comfort from Chronic Pain

I can feel my stress dissipating as soon as Dorie lays with me. It’s a tangible and therapeutic benefit of cat ownership and a wonderful feeling period. If you don’t currently own a pet, it’s something to consider.

Books

I love to read and a good book can completely transport me away from a painful day. I get so caught up in the story I’m reading that everything else fades into the background.

My personal preference for books is stories of people who have overcome challenges, especially Chronic Illness of their own. I also love autobiographies and biographies in general, and books on True Crime. Ann Rule is a favourite author in that category.

A couple of suggested books and authors I adore:

Salt In My Soul is a wonderful book about a young woman who lived with Cystic Fibrosis. Mallory’s story is both joyous and sad as she talks about being a young woman with a fatal disease. Her mom takes up the story when Mallory can’t and shares her daughter’s life and dreams.

Let’s Pretend This Never Happened is by one of my favourite author’s, Jenny Lawson. This is a true account of her life growing up with mental illness and is absolutely laugh-out-loud hilarious. I also recommend her second book, Furiously Happy as a follow up!

You can also follow Jenny on her blog site, The Bloggess

Music

Everyone has their own preferences when it comes to music that makes them feel better. I have one friend who loves to rock out to death metal and another who prefers classical music.

I find that listening to the old classics is what works best for me, to distract me from pain and discomfort. I love Led Zeppelin, Pink Floyd, Queen, Electric Light Orchestra and so many more. When I can sing along with the songs, it’s easy to put pain behind me.

Choose a gendre that suits your style, or even your particular feelings for the day. Light and upbeat or dark and moody, the goal is to move beyond pain so your focus is elsewhere. Living with Chronic Illness is never easy, so music can often be a great distraction.

Videos/TV/Movies

Living with Chronic Illness often leaves you with a lot of free time. Some people are more visual than others and find that movies and/or TV are what helps them best. With services such as Cable, Hulu, Netflix and more, there’s an endless variety of content available.

One new thing that’s all the rage is ASMR videos. ASMR stands for Autonomous Sensory Meridian Response, and is a sensation of tingling that you get in the head and spine after viewing/hearing certain sounds or sensations. Hair brushing can bring this on, along with many other stimuli.

This Wikipedia article sums up ASMR nicely and you can find many videos on YouTube to help you experience the sensation. I haven’t personally tried it yet, but if you have, I’d love to hear about it…just leave a note in the comments section.

Another way of relaxing is by sitting outside and soaking up the sounds of nature. Birds, crickets, frogs…all of these can be peaceful and induce a sense of calm in the body.

Hobbies

I am just starting a new hobby of “Paint By Numbers” and have been given this kit by a company called Winnie’s Picks. I will be doing a full review of this product at a later date, when my painting is complete, but I wanted to share with you here what a wonderful kit this is.

Inside the solid mailing tube is everything you need to complete a full size painting. There is a canvas as well as a paper copy of the painting, several different sized brushes and all the paint you can possibly need to complete the work. You do need to frame this yourself when it’s done, but everything else is there. The prices are incredibly low for the quality of product too!

There are many hobbies that you can do when you live with Chronic Illness. You want to be able to work on things that you can pick up and put down when needed, but that still give you a challenge at the same time.

Some of the best hobbies to consider are needlework, knitting, crochet, felting, colouring, painting and working with paper, such as cardmaking. You can also get into more detailed work, such as embroidery, jewelry making, candle making, soapmaking and so much more. Tell me about your hobbies in the comment section. I’m always up for learning new things!

Conclusion

I love watching the hummingbirds that come to our feeder. They bring me such joy as they sip at the nectar I’ve left for them, and I can almost feel my blood pressure going down as I observe them.

Finding ways to live with Chronic Illness doesn’t have to be difficult. We generally have everything we need for distraction in our own homes. Sure, there are days when we just feel too ill to watch a movie or play around with a hobby, but for the most part, we can use the above techniques to distract ourselves.

What sort of things do you do on a daily basis, to manage your Chronic Illness? Share with me in the comments so we can all benefit. Remember,

There Is Always Hope

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Why I Blog (About Fibromyalgia, Chronic Pain and Invisible Illness)

I have been blogging for a couple of years now and recently someone asked me “why do you blog? What do you get out of it?”

It was a good question, so I thought I’d write a post about my reasons for blogging and what I hope to achieve with this blog site

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Image by TeroVesalainen from Pixabay

Education

When I first started to blog, I wrote about my total hip replacement because I’d had problems trying to find first-person accounts of undergoing that particular type of surgery, especially for someone who was in their 50’s. Hip replacements seem to be done on mostly older folks (in their 70’s or older) but rarely on the younger set, unless you’ve been born with a hip problem or have suffered a devastating injury. 

Because I was only 54 when I had my hip replacement done, I was considered “unusual” by my surgeon (and yes, I’m sure he meant my hip only and not me in general!) so trying to find others in the same position was difficult. I had read enough websites to understand the technical side of the surgery, but I wanted to find out what it was like to actually have the surgery and then recuperate and go on with life. 

Since I was unable to find a lot of good information, I decided to write about my own experiences, so others in my position might be able to find what I was looking for. Once I’d written about that, it seemed natural to go on and talk about other health issues I live with and how they impact my life. From there, the blog site grew organically and became what it is now – a place for articles and posts about Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses, such as Lupus, MS, Arthritis, POTs, Ehler’s Danlos Syndrome and more. 

The goal has been achieved and I’m proud of what I’ve been able to create with this site. I hope others feel the same. 

Compassion

Living with a Chronic Illness is hard work. People with Chronic Pain and Invisible Illness are often left feeling isolated, and when you find someone online who speaks your language, it can be like finding an oasis in the desert. 

In addition to educating people, I wanted this blog site to be a place where comments could be left freely, allowing people the opportunity to share what’s going on in their lives in a safe way. When readers have identified with a particular post, their comments reflect their own lives and situations and I take that seriously. I often respond back, not always in the comment section, but in-person to what they’ve said.

My responsibility as a writer is to ensure that not only am I educating people but I’m giving them some hope as well. Life with Chronic Illness is painful physically and mentally and when you find a spot online that reflects your own thoughts and ideas and connects with you, there’s a genuine freeing sensation. You feel less alone in the world and you realize that other people “get it”. Being understood is an amazing feeling and us Chronic Pain Warriors don’t always feel understood. 

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Image by Gerd Altmann from Pixabay

Volunteering

In many ways, I see writing this blog as another form of volunteering that I do. My focus on health and wellbeing extends beyond this blog site, but I consider the site to be one of service to others. 

Like my other volunteer roles, I receive no compensation for producing this site, with the exception of any money I might make with Affiliate Marketing (more about that in a minute). I do this purely because I want to help others who are in Chronic Pain and who feel lost and alone and in need of information that might help make their lives better. 

My other volunteer roles include committee work for Surgical Quality Improvement, improving Clinical Resources for Patients such as updating Patient Information Sheets received when you are discharged from an ER and Laboratory Quality Control to ensure that Patients are receiving the best care possible when they are providing lab samples for doctor-ordered tests. I also sit on a Provincial Measurement Working Group that is creating a survey for Patients in British Columbia, Canada to ensure that their care received has been the best it can be. 

These roles, together with this blog, give me ample ways to help others, and that brings a lot of happiness to my soul. 

 

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Image by John Hain from Pixabay

Helping Myself

My final reason for blogging is purely selfish…I do this for me as well. It’s therapeutic to be able to write about what’s new in health care, or what I’ve been thinking about a certain subject. I love being able to tackle controversial subjects or bring emotional issues to light, such as intimacy when you are Chronically Ill. 

I consider myself lucky to be in a position where I can have some influence over others and perhaps introduce them to a treatment they haven’t heard of before. There’s nothing quite as satisfying as hearing back from someone who says “you changed my life” or “I really needed to read this”. It makes up for the research, the typing on days when my hands hurt and the work of coming up with new topics that will be of interest.

If you are a blogger, you understand what I’m talking about. If you are a reader, just let me say that having responsibility for you and what I’m producing for you is an honour I don’t take lightly. I want to make sure you’re getting information that benefits you and your health because I know what it’s like to live with Chronic Illness and I know the types of things that I’d like to read and learn from. 

Thank you for allowing me to share these thoughts with you. I appreciate your comments below, or you can always write to me using the Contact Form. 

I do this because I love it. I love sharing and helping others and I hope I’m able to continue for a long time to come. Remember…

There Is Always Hope

Interview October – Jan

Interview October is almost over, but we have another guest to meet – Jan Collins

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Introduce yourself and tell us a bit about you…  

I am Janet but prefer Jan and I am 60 years young. Recently divorced after 37 years of marriage I have 2 children, Zoe 35 and Nathan 26. Zoe has my only granddaughter Amerthyst who will be 7 in November and she is the light of my life

Chronic illness(es)/disabilities I have… 

I have among other things chronic brittle asthma, COPD, type 2 diabetes, osteoarthritis and the onset of osteoporosis in my left hip. For 15 years I was on steroids for my asthma which has caused me all sorts of digestive problems. I am pleased to say that I have recently come off the steroids and have already lost over a stone (14lbs) in weight

My symptoms/condition began… 

I have had asthma all my life, when I was 4 my parents were told it was infantile asthma and I would grow out of it. In the interim, I have had bad spells and good spells. About 16 or 17 years ago I collapsed at home and if it hadn’t been for my then 9 year old son who didn’t panic but kept his calm I could have died. For the next 6 months or more I was in and out of A and E, my mum and husband were on the phone every day trying to get me to see a specialist. We were told that as mine was asthma, not lung cancer I didn’t have priority. When I did see the specialist he put me on steroids and boy did that open a can of worms. Every time they found something else wrong it was due to the steroids. I put on loads of weight and lost all my self-esteem.

The hardest part of living with my illness/disabilities is… 

The worst point was being diagnosed with diabetes 3 years ago which restricted my already limited diet even more. My ex also has diabetes and could eat almost anything without it causing any problems. I quickly learnt I couldn’t and was put on insulin developed fat growths on my arm and in my eye and had problems with my feet. It was so frustrating, I lost my self-confidence and my controlling ex basically persuaded me I couldn’t do anything so I became housebound except when he took me out. Then he walked out, my son helped me do a food diary to work out what I could or couldn’t eat, yes it was limiting but at least I knew where I stood. I discovered an inner strength and regained some of my self-confidence. A haircut and losing weight with people telling me how good I looked did a lot for my self-esteem as well.

A typical day for me involves… 

At the moment a typical day for me starts when my alarm goes off at 5am. This gives me three-quarter’s of an hour to get up and get dressed before I wake my son. After the first of many cups of tea the dog and I go for an OK let’s get our bodies moving walk, we both suffer from arthritis. This is the first of at least 3 walks we do. Then it’s medicine time which can take up to an hour. 2 mornings a week the community transport bus picks me up from home and takes me into town (I can no longer drive due to my eye problems). My daughter comes over once a week and we go out for a coffee. Afternoons are given over to crafting and studying, I am doing an O. U. English literature and creative writing degree. After a late tea and my second lot of insulin and, my 3rd lots of nebules I do my son’s lunch box for the next day before sitting down for the evening. I usually catch up on social media and deal with anything that has cropped up, write to my numerous pen pals or read. Every day my intention is to be in bed by 10 but it rarely happens. For one thing, my evening routine of medicines, putting cream on my feet etc takes over an hour.

Being ill/disabled has taught me… 

Over the years I have adapted my lifestyle to suit my needs but despite what it sounds like my health doesn’t dominate my life I always say I am not disabled just less enabled in some fields but have learnt so many new things to more than compensate for those things. People feel sorry for me but I can’t understand why I have so much going for me and have learnt so much. These days I can’t imagine living without my health issues but that aside my Jack Russell Terrier Herbie is my lifeline, he is company, he gives me a reason to get up and walk him and thus exercise. As a result of watching my diet changes and walking Herbie, I have lost over a stone (14lbs) in weight. I am still overweight but every bit helps.

What advice would I give someone recently diagnosed… 

Pace yourself, set targets for yourself but don’t knock yourself up if you don’t achieve them.

One positive of having a chronic illness/disability is…

Being disabled has taught me so much it is difficult to remember them all. Tolerance, patience, understanding, empathy, compassion, I have become a better listener and learnt many new skills all as a direct result of my health problems

 To quote 2 sayings my grandad used to say

” count your blessings one by one every day.” These might be anything from the love of your family and friends, sunny days or just the fact that you are still breathing.

” Smile and the world smiles with you, cry and you cry alone”. People get fed up with you if you are always moaning.

Life is for living, enjoy.

My links are:

collinsjan20@gmail.com and people can private message me anytime.

Other than that I am a member of Disability Matters and I am an ambassador for the online group Carenity.com specialising in Respiratory Diseases, Chronic Pain, Depression and Diabetes.