My Chronic Illness and how I’m Getting On in April

Each month I like to join up with Sheryl’s Writing prompts community to talk about my Chronic Illness and how I’m getting on. The Prompts this April are forgetting, modifying, maintaining, vocalising and trusting.

FORGETTING

Brain fog is an awful condition and it’s more than just forgetting a little thing here or there. I can try to think of a word, or something I’m supposed to do, but it just won’t come to me no matter how hard I try. I think the word forgetting is probably the worst. I feel such an idiot sometimes when I’m half way through a sentence and I can’t think of the word I’m looking for, it doesn’t even have to be a complicated word. I hate it so much. Sometimes the brain fog is so bad I feel like I’ve just come in from a night out and had a little bit too much to drink. Not only is my head fuzzy and everything seems complicate but I wobble and slur just like I’m drunk.

I have always been a list writer and this helps me a little. But, where I would once sit down and enjoy writing my ‘to do’ lists (I even had a large notebook entitled Anne’s book of Amazing Lists) now I can barely remember what I’m supposed to be writing and I have to keep coming back to it when something pops back into my memory.

I sometimes wonder if it’s a sign of early dementia, but it’s probably not. It’s a mixture of my condition (Which is neurological) and the fact that I take so many prescribed drugs.

MODIFYING

Just before the pandemic became serious and we had our first lock down, I started having some modifications done to my home. Thankfully, they finished my wet room which I hated at first but it’s a real bonus. Why did I hate it? Because it was just another thing there like a slap in the face saying ‘hey, old lady, you are a cripple, get used to it.’ I still have trouble accepting that I am disabled (or even old, how did that happen?) But, I can shower in comfort, it’s so much easier not having to climb in or out of the shower (The one upstairs was over the bath so even more difficult.) The aids are ugly, but they make me feel safe. I know I won’t slip or fall with so many things to hold on too.

The other modification which was being measured up just before lockdown 1 was a lift going from the living room to my bedroom. It had to be delayed and I’m supposed to contact them when I’m ready for them to fit it. But, I really can’t face it. I don’t mind losing the space in my living room, it’s pretty big and we’d just have to move the furniture a little. But, my bedroom is not so big and I don’t think I could cope with moving the bed to a different position. And, the whole thing makes me feel incredibly uncomfortable, I can’t really explain, or rather I can but I don’t want to bore you with my crazy brain and it’s thoughts.

Another modification we are doing ourselves. I am transforming the downstairs toilet/shower room. I’m having the walls and radiator painted and I’ve brought new floor tiles. I have a new little cupboard to go down the side of the shower to keep the toilet rolls and cleaning products in. And I’m buying a new toilet surround. A smaller one than the one I have at the moment which takes up far too much room. I’ve tried the grab rails but I can’t use them, so I need a surround to help me get up, the one I’ve spotted is more discreet.

MAINTAINING

I do worry that my home is falling into disrepair. My ‘to do’ list grows longer every day and it barely gets anything ticked off. There is so much I can’t do, but I can do a little at a time. Yesterday I managed to clean a corner of the kitchen where the boiler is because we were having a man out to do a gas check. I had to move some things around and clean the floor and after he’d been I was happy at how much better it looks. I want to maintain that now. I’ve also decided that my kitchen aids are no longer going to be used for dumping things on. I cleaned off my trolley which had accumulated a lot of junk and I’d stopped using it. Now, it’s all cleaned up and empty and I can use it again for it’s proper purpose of helping me to move things around.

I’ve cleaned up a kitchen cupboard and I plan to do the others, but slowly. I can’t do too much at once or I will spend two or three days paying for it by not being able to move. So while I’m determined to do the maintenance on my home, I also have to maintain my own health. (I’ll admit that cleaning the corner for the boiler man cost me 4 hours of being in pain and unable to move later in the day, so I really need to be more careful.)

I’ve given up on asking for help.

VOCALISING

April is Autism Awareness Month, which is now being re-named as Autism Acceptance Month. I usually write some things up to join in but I’m a bit behind this year. I have three autistic children aged 34 yrs, 16 yrs and 11 yrs. The youngest was only diagnosed this year. Life is never easy in our home, but as my children are now older I tend to speak less about them.

Maybe I shouldn’t, maybe I should vocalise about what life is like with three Autistic Family Members. But, I’ll probably just write something up about what I’ve learned about Autism and how it should be accepted more.

I try to let people know what it’s like living with Stiff Person Syndrome and I have a Facebook blog. I would love to be able to support and help others but it’s all I can do to keep going myself. But I will keep telling my story even if it’s lost me family and friends in the past. No-one really knows what it is like living like this every single day. And I don’t know what’s around the corner. I will talk about it while I can.

TRUSTING

Way back when I first got sick I trusted in my Doctors completely. Now I feel less trusting. It’s not that I think that I am being lied to, I just don’t really believe that they know what to do with me.

I also find it difficult to trust others, my condition is very rare with some unique and, frankly quite strange symptoms. I don’t know if people really believe that my symptoms are real. I sometimes think that my family believe I’m putting it all on, or just trying to get attention. It really makes me feel so awkward sometimes.

Finally

I do try to let you know how I’m feeling while living with this condition. Sometimes it’s difficult because, as I said, I feel that people don’t believe me. I think the chronic illness society will understand the most about what it’s living like in pain every single day, trying to get on with life when life doesn’t really want you to continue. When you feel extra poorly it’s always ‘just your illness’ but I wish it wasn’t. Sometimes I wish I has something that people understood and could sympathise with. People have so much compassion for those with cancer, or other life threatening illnesses. Well, hello, my illness is life threatening too. It affects all my internal organs and I could die in a severe attack. But, even my family, although they worry, they don’t actually accept that tomorrow I could not be here.

The pain is getting worse, I could sit here and cry. It hurts to do everything, even crochet. After an hour or so of sitting on my backside listening to my ebook and crocheting I’m left with pain in my hands, arms, shoulders and even my flipping bottom. What others see as me relaxing and doing things I love, is causing me pain.

PAIN, I hate that word. I would like to eliminate it forever.

I’m never going to stop hurting am I?

I’m Still here.