I've decided that I want to write things down for a couple of reasons. One is that I find it helpful to put it down to talk about it in a way that I can. The other is so that people can get some understanding about what it's like. Maybe there are other's who feel similar who can relate? Or maybe I can just let people know that living with a chronic illness is tough but not impossible.
I am happy to answer questions. I'm happy to connect to others. I do not want sympathy or to be anything that I'm not. I am not brave, strong, amazing or any of those things. I am also not a whinger, complainer, attention seeker.
If writing a blog is attention seeking then it's doing it in the right way. I want people to know what it's like and maybe help others.
Night Time
I have to go to bed as soon as I feel tired. If I leave it too long then getting upstairs can be difficult. I need to reserve that bit of extra energy to make the slog upstairs. I turned down a lift. I had plenty of time to think about it and I decided it wasn't the right thing for me. I didn't want to lose the space in my bedroom where it would have been installed. That may sound silly, but everyone needs a sanctuary, a place they feel safe and can go when things are tough. It's my bedroom and I didn't want a lift put in there. I would like a stair lift at some point, but for now I'm managing to get upstairs, mostly with upper body strength so I'm hoping I can hold on to that for a while longer.
Once upstairs I change in the bathroom. It's warm and I can sit at the right height and angle to undress and change. The bedroom is cooler. I don't like the radiator on unless it's really cold, I prefer to snuggle in the duvet to keep warm. I sit on the bed to take my medication then using my remaining strength I pull my legs onto the bed and lie down. There is not much more I can do, I don't turn over, or move around to get comfortable. Where I lie is where I sleep. I have a bed guard that helps my top half from falling out of bed. I can use this to help pull me up when I need to get out of bed.
Morning
I don't move in the night and this can cause me to become very stiff. Some days are not so bad and I can move okay, but on a bad day I can't move at all and need help to move my legs out of the bed. This is often done by my 10 year old son who is first up in the morning. He'll drag my legs out while I lift my upper body with the frame. He then sorts out my medication and gives it to me with my water. While in sitting position I start to regain feeling. Along with pain.
When I'm ready I make my way downstairs. I have two bannisters to help me an rely on upper body. My legs are generally bad in the morning, even more so than at night. It takes a while to get going.
My Day
I can move around during the day, once my medication has set in. I can make tea, breakfast, fold the washing. Somettimes I can fill up the washing machine or tumble dryer. I can tidy things and wipe down the kitchen work tops. I can wash up things in the sink. If I'm feeling good I may even be able to empty the dishwasher.
I try to keep the bathrooms clean. I've invested in cleaners with long handles for those hard to reach places. I find bending extremely difficult, and stretching is difficult too. So, movement is hard but not impossible.
If I bend or stretch too far the pain is incredible, It can happen anywhere that is affected, my back, my side, my legs, my arms, my neck...anywhere. But, I have to make sure I don't go that far. That sock at the back of the tumble dryer will have to stay there. That toilet roll that has dropped behind the toilet isn't going to be moved by me. Sometimes, even picking things up off the floor is just too much.
I feel and act stiff, because that is what my body wants. I walk funny, it's hard to explain, but I feel like I'm walking through treacle and I look like I'm walking after two bottles of gin. I wobble and lose my balance. I'm good at not falling in the home because I know wherever I go I have something to help me. If there are things or people in the way it's much harder. The way has to be clear of obstruction. I find it harder to walk in unfamiliar places, even with aids. My brain is trying to concentrate more on the new situation that the simple act of walking. That's part of my condition, my brain doesn't communicate properly with my body. I can still do things, but it either has to be something completely natural to me, or I need to think really carefully.
It's hard to explain. I can pick up the remote and turn over, but if someone asks me to pass the remote, then I find it so difficult to process the request and the action. It's very frustrating.
I'm happier at home. If I go out I need my wheelchair. But that's a whole different day. My normal day involves a little housework, a lot of sitting down on the settee, a bit of reading, crochet or tv watching to pass the time. I also manage some cooking, but lately I'm finding it difficult to stand in the kitchen for very long. I have a kitchen stool, but it's only good if I don't have to move. I can sit and chop vegetable for ages, but getting up and putting them in a pan or on the oven involves a lot of effort, getting up from my chair and sitting down again is just another job for my body to do. The chair is good, only if I don't have to move!
When the pain hits bad I can do nothing but lie on the settee, or flop in awkward positions that my family do their best to make better for me. When the pain gets too much my body gives up completely and I can't move. Sometimes at all. Even my mouth so I can't speak. I hate what my family has to go through and I'm glad the younger ones leave the room. Generally, some pain relief and a nap brings me back again. It doesn't happen every day. But when my treatment wears off it happens more frequently. I get warning signs that it's going to happen so I try to be careful and not push.
Other times I get frustrated and push myself just to see if I can avoid it. I fight it, but I rarely win. In fact, I don't think I have ever won.
It's My Life
I've accepted my life now. I would give anything to be fit and healthy again and will never give up hope of a cure. But for now, I've accepted my limitations, I suffer my frustrations but most of all I really feel for my family. That's why I keep fighting, for them! I'll keep going, and pushing and doing what I can because that's the way I am.
Anyway, lying in bed all day being waited on hand and foot doesn't really appeal to me.... (mmm, maybe)
Welcome to my story, can you relate? Do you want to chat? Feel free to comment if you do.
I suffer from a rare neurological disorder called Stiff Person Syndrome. It came on quite suddenly, although, with hindsight I can see I had warnings that something was wrong. I hospitalised on 1st |Jan 2016 and kept in for two weeks. They found lesions (inflammation) on my spine which they put down to Transverse Myelitis. When I didn't recover they found a rogue anti body called a glycine receptor in my blood. I was then diagnosed with Stiff Person Syndrome plus Progressive Encephalomyelitis With Rigidity and Myoclonus in January 2017.
https://rarediseases.info.nih.gov/diseases/5023/stiff-person-syndrome
https://lizblows.wixsite.com/spsuk
https://lizblows.wixsite.com/spsuk/map
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3146306/
