I’m going to try and use this month’s prompts from Sheryl at A Chronic Voice, to express myself. I often gloss over a lot of the effects of my illness, in particular after I was accused of moaning too much. I’ll explain more as we go along.
I use an app on my phone which prompts me to say how I feel throughout the day. It’s called Daylio and you can set it to reflect the things that affect your life. I find myself repeating things over and over and my most common moods and feelings are ‘overwhelmed’, ‘stressed’ and ‘pain.’ It pops up, and I click to let it know how I’m feeling, a constant reminder to let me know just how awful it all is. The idea was to keep a record so I could be more honest when I visit the consultant, it’s easy to gloss over the awful.
However, always the optimist, I tried to inject some positivity to my days. I added a daily prompt to think of something I’m grateful for. There is always something, whether it’s just a nice cup of coffee made by my daughter, or a gift in the post that I wasn’t expecting. It has made a difference to my monthly chart by this little repeating high each day. It’s not huge things on this mountain I’m climbing, but the little spurts of joy I have to grip onto.
I’m always wondering whether all the drugs I take are helping me or not. The easy way to find out is to miss a couple, but this just proves that I can’t do without them.
I also wonder if people actually understand at all what I’m going through. My family seem to think that I am getting better, when I don’t actually feel that at all. Maybe they are in more denial than I am? I find that connecting and speaking to others who are chronically ill makes me feel less alone in my suffering. It’s hard to talk about suffering, no-one really wants to hear how difficult life is all the time. No-one really wants to know because they don’t know how to react and there is only so much sympathy they can give. It’s not sympathy I want though, in fact it makes me squirm a little. What I would really like is empathy and understanding.
In reality, though, no-one understands the suffering of another person, it’s all relative. If you’d have said to me four years ago, how would you feel if you were in pain every day and unable to walk, I’d have had no idea. It’s no wonder that no-one else understands.
I have pondered over this one quite a bit. I could say how I’m turning into a statue, but I really hate that term. Stiff person syndrome is often called Tin Man syndrome because it’s sufferers turn stiff, but this seems to be a different experience for those with the condition. I have a particular form of the condition, progressive encephalomyelitis with rigidity and myoclonus. I’ll explain each term in turn;
- Progressive: it will get worse
- enchephalomyelitis – swelling on the brain and/or spinal cord
- rigidity – becoming stiff or ‘rigid’
- Myoclonus – jerking, spasms, involuntary muscle contractions
I’m not turning into a statue, but each part of me can become stiff, either for a little while or permanently. Medication can help, but there are certain muscles that have been stiff since my first attack 3 1/2 years ago and they haven’t improved. The IVIG has helped with the myoclonus, I rarely jerk now, which makes it a little more comfortable being around others.
The hardest part is getting people to understand. When the condition is so rare not even the doctors understand what is happening to me, how am I supposed to explain it to others. I’m told constantly by family and friends that I look like I’m getting better, when I know I am getting worse. I can only assume that I am getting better at dealing with it all.
Well, actually, I know I am getting better with dealing with it all. I used to panic when the pain in my chest got so bad I could barely breath. Now I just relax and deal with it, I know it passes eventually. I would panic when my body would go into completely stiff spasms and render me paralysed, now I just get on with it. It hurts, but it doesn’t last forever. I used to freak out at the fact that I was constantly in pain and it just wouldn’t stop. Now I just accept it and carry on. And sometimes I carry on a bit too much and end up getting myself into such a state that all I can do is nothing at all. When life throws this kinds of crap at you, all you can do is get on with it.
What am I desiring? Well, it could be a cure, a medicine that works and makes me feel good again. I could desire some real understanding from someone else, not sympathy, but empathy and the right kind of care.
Or maybe I could desire the ability to walk again and get on with my life like before, to run around with my kids, to drive my car, to go out alone, to go back in time and stop this condition from taking everything away from me.
What if I could keep it simple and desire a lovely holiday with my family, the ability to sit on the beach and enjoy some fun with my children. It’s the simple things that keep me going.
Or an evening at home when everyone is in a good mood and chatting and the television gets drowned out. And there is laughter and joy and for a while the pain really doesn’t matter at all.
Linking up to Sheryl from A Chronic Voice, for June’s Link Up Party
You can read my May Prompts Here
It can be so hard to get people to understand things like these. My son has special needs and when he was younger I used to get people asking when he was going to grow out of it or get better. I can’t imagine how hard things must be for you at times. Finding something to be grateful for is good, even when you feel like crap, thinking of something good can give you a little smile.
I don’t think people can understand that some things just don’t get better, or can be grown out of. x
This is so interesting to read. To read more about your illness.
The illness sounds awful how it progresses. I had no idea. I’m glad your IVIG treatment is helping with the jerking. I hope you get some of the things you desire. x
I’m thankful for finding Sheryl’s link up party. Although it’s awful to know that other people are suffering, it’s also makes me feel less alone and more understood. It’s so difficult to make people understand what it’s like living with a chronic illness, especially when you’d just rather forget about it yourself. And yes, I’m glad the jerking is improved, there was a time when I broke the leg rest on one of my wheelchairs through jerking, but now it rarely happens which is a big relief. And seeing my family happy is all I really desire (and the wish I live long enough to see my little man grow up.) xx
You hit the nail on the head. People really do not want to get into it with us because they get so uncomfortable with what to say when all we really need is a kind ear that’s not dismissive of what you are experiencing. You endure so much its bound to make you more resilient and better at dealing with it. But it must be so frustrating to be told you’re looking or getting better when you feel and know it’s to the contrary. It really is those simple desires that can be so heart warming and fulfilling when not only the TV gets drowned out but a little bit of yout pain. I really hope you get to enjoy some of those days this month. Xx
Thank you Niamh xx
Thanks for joining us, Anne! I’m impressed with your determination to look out for the silver linings, and be grateful each day. Btw thanks for sharing this app – it seems to be exactly what I need! My psychiatrist asked me to chart my mood every day to see if there are any patterns in relation to my brain fog, and so far I’ve tried Google Calendar and my own Pages sheet but they aren’t so intuitive.
Sending hugs and hope you get even better at coping with the stiffness. It must be scary when it hits, especially if you’re outside or there’s no one to help.
Thanks for hosting Sheryl x Daylio is a really good app. and for a small fee you can fully adapt it to suit you, your moods, your activities, your feelings. And you get weekly, monthly and yearly charts to hand to see how you’ve been getting on. I love it.
Great post that will help many people, thanks for sharing #abitofeverything@_karendennis
Thank you for helping all of us to understand this condition. You have raised a lot of consciousness today. And you were very effective at using all the prompts. I am desiring a cure will be found also.
I have heard of your condition from a documentary years and years ago. i wish a cure for you as well and everyone who lives with this. I wish you all the best.
This really resonated with me. I think because we live in a time of such advanced medicine that everyone assumes that everything is curable. That if you get sick you’ll get better. And if you’re not lying in bed, or looking fevered then you must be fine.
Really enjoyed reading this – it was wonderfully honest.
Although I haven’t gone through what you’re going through right now, I can totally relate to what you say about how people just don’t get it. A little different I know, but some people seem to think that just because Craig has now had his heart transplant, everything is solved and all is good and yes it has saved his life, but the future is still unknown to us. They don’t see the amount of drugs he has to take each day (42 meds a day) and how they effect his body and limbs. How he has to cope mentally with somebody losing their life to help save his and the list goes on. I think some people although not intentional just take things at face value. I’m so glad that your IVIG treatment is helping you and hope you get to do lots of things that make you happy, both big and small. xx #MMBC
Thank you so much for sharing! I hadn’t heard of your condition before, though I, too, have myoclonic jerks! That feeling of not understanding is so hard to deal with – and with a rare condition, it’s hard to find fellow zebras who can truly empathize with what you’re managing. I’m going to check out Daileo too, but wanted you to know that you are not the only one dealing with your symptoms, even when you feel like it!
thinking of you and wishing you the best!
Thanks again for writing such a wonderful and diverse post, love how these prompts can delve into so many different parts of living with a chronic illness. Like you, I have so many issues with people not understanding, and like you so how can we and get others to understand when often the doctors what is happening with our bodies! I love your sheer determination to continue to look for the silver linings in everything despite the limitations and difficulties created by your conditions! I hope you continue to be able to do so!
Thank you for being so honest in your post. I can see how difficult it must be when most people are able to offer
only sympathy rather than real empathy. I won’t add further sympathy but instead will offer my admiration for you being willing to educate us via your blog, and because of your determination to still look for a positive in every day.
I’ve also used Daylio before, so I’m glad to hear you’ve injected some positivity! I have found with numerators tracking apps that however helpful they are, they often don’t help you be positive much of the time…plus health systems tend to help those who list more/higher pain problems so it’s a tough balance. Hope you know there are many out there who understand or can at least cross-condition empathise x
It’s both a relief and very sad to know there are other’s that understand chronic pain. My Daylio lets me know if I’m suffering too much and then I can do something about it. But it’s also nice to see the positive additions throughout the month. You have to have something to live for x
Thank you for sharing all of this. You are a very strong woman to be able to see that while others may want to see you as getting better, you realize you are more acceptance. I know what you mean about wanting empathy and understanding. I don’t have a rare disease, just a bunch of common ones that people prefer to deny (bipolar, fibromyalgia to name two), but I can empathize with you in so many ways. I look forward to reading more of your story.
Thank you Lydia, I’m sorry you are suffering too.