In the Beginning
Two and a half years and a couple of weeks ago I woke up with pins and needles and ended up in hospital paralysed. It seemingly came from nowhere, but I now believe I did have hints that something was happening with my body.
After two weeks in hospital I came home with a zimmer frame and the promise that after six weeks physio therapy I would be fine. Nine months later when I saw my consultant next I turned up in a wheelchair, things were not fine.
I’d had an MRI in hospital which hadn’t told them much about what was wrong with me, so my consultant did blood tests, muscle tests and nerve tests and I ended up with a diagnosis of Stiff Person Syndrome, or a specific type of SPS known as Progressive Encephemyelitis with Rigidity and Myoclonus, or PERM.
So for the first year I was expecting to get well, but exactly a year after my hospital admission I found out that not only was I not going to recover, but my illness was progressive.
I am still in a wheelchair although I can walk for short periods with aids. I walk around my home but I always have something to hold on to. I don’t walk outside very often, I’ve tried sticks, a rollator (walker with wheels) and crutches. They all help with balance but nothing can stop the pain and fatigue. I get so far and my body just doesn’t want to move any further.
I take a cocktail of drugs every day, but the pain is always there, I may be able to dull it, but it never goes away. Sometimes my body freezes up into a complete spasm. Sometimes I can’t swallow properly, sometimes I can’t breath properly, it’s unrelenting.
Apart from the drugs I’ve had intravenous steroids which helped in the first instance, but did little to help after the second round. I have regular doses of Intravenous Immunoglobulins (IVIG) but it doesn’t help much. I get reduced spasms and it helps the myoclonus (jerking) but it’s not a miracle cure as I’d first hoped it would be.
Parts of my body are always stiff, parts are always in pain, parts always have pins and needles or neurological pain. It affects my sleep, it affect my life, each and every day.
I also have startle reflex, so a loud noise or something to make me jump, or even an intense emotion can make me go stiff, if I’m standing I may fall, if I’m sitting or lying, it just hurts.
I also have vertigo which can come at any time and last anything from minute to hours. This makes me feel like I’ve just downed a bottle of vodka, but not in a good way. Double vision, dizziness, loss of balance, the rotten stuff.
I could go on and on with symptoms but I don’t want to bore you.
Yes, I’m half way through my third year, my youngest can’t even remember the times when I could walk. When I used to chase him around the school playground while waiting for my older girls to come out of school.
People get fed up of you when you are sick for a long time. At first it’s concern;
“How are you?”
“Are you feeling any better?”
“When’s your next hospital appointment?”
“How did you get on at hospital?”
Then they get bored;
“Are you not well yet?”
“I thought you’d be walking again by now.”
I’ve even been accused of moaning too much and not getting on enjoying my life.
I’ve even been accused of competing with others for attention.
Yes, people have had enough of me and my sickness.
Do they not think that it would be my greatest joy to announce that I’ve had a treatment that has worked, that my pain has gone and I can walk again? No, for some reason I’m just a miserable old cow because I haven’t gotten any better.
Despite what some people think of me I have always been a positive person and I’ve approached each treatment with excitement and determination. Yes, it does get me down when it doesn’t work, I don’t think there is anyone who wouldn’t feel the same. I do get into some very dark places sometimes when I can see is the pain and disability and the hurt I cause others. Sometimes I think my family would be better off without me.
Then I bounce back and fill my life with happy things. I start projects that I can get excited about, something to look forward too. Plans, future plans. Even if things don’t get better I can cope if they stay the same. If I get worse then I’ll deal with that too, one day at a time.
I am working with some other Stiff Person Syndrome sufferers to gain awareness for our condition and hopefully trigger more research into diagnosis, treatments and even cures. I am reading studies, finding out all I can and most importantly, learning from others who are living with it. It seems daunting the amount of research I am doing, but it gives me a purpose and hope.
I have also decided on what I want to ask my consultant when I next see him. I’ve found out that there is a drug out there that have helped people just like me to get back some life. I don’t know if he will approve it but I’m going to ask all the same. Also, I will give up the IVIG, yes, it helps me a little but I know it’s in short supply and others gain more from it than me.
If you’ve read this far, then thank you, I know there are people out there who genuinely care. Just as I know I will never give up hoping to get well again.
You deal with your condition so well….You are always so positive. I know you have your down days but always bounce back.
Good luck with your consultant. It doesn’t hurt to ask for different treatment.
Hi Anne, I don’t think you are a miserable old cow! People like yourself, who share their experiences living with a disorder are amazing. I’m not sure I would ever have the strength of character to keep going and everything you share helps people like myself understand something we may one day come into contact with. I’m sure you have dark days and you have every right to, and if you ever had a good moan I’d still take my hat off to you. I think you are an amazing woman and a fine example of how not to let a b*****d health issue get us down.