I'm not a doctor and can only write from my own experience and the experiences I've collected from speaking to others. If you believe you have any kind of illness then please seek out help from a professional.
Saturday, 8 May 2021
Sunday, 28 February 2021
After a year of misery and confinement we can finally see the light at the end of the tunnel. Do we go towards it? We will, but with trepidation.
I have had my first vaccination, so has my husband and carer and our eldest daughter who works for the NHS. We are now feeling a little more safe, although we know that we could still get sick.
If you have a rare disease or condition, then you are even more at risk from the pandemic currently swarming our world. As someone who has a poor auto-immune system I don't know how my body would react to the Covid virus. It was a small anti-body that set my immune system into overdrive and caused all my problems in the first place. It has a name, the anti glycine receptor anti body. Because of that one little anomaly my body decided to attack itself and now I'm left in constant pain and wheelchair bound when outside my home.
My daughter has a less rare condition, Elhers Danlos Syndrome. But she doesn't have the classic version and we are not really 100% sure what she has. She has been diagnosed with a Marfanoid Body Shape, but so far no other indications that come with Marfan Syndrome. Although they will be keeping an eye on her as there can be complications as she gets older. She also has a rare form of psoriasis, which is not responding to treatment. She has slight scoliosis but not bad enough for surgery. She also has Autism, which I believe actually helps her to deal with all her other issues. I can imagine that life would be very different if she was a typical teenager.
So as people rush towards the freedom being offered, whether they take the vaccination or not is up to them. No one can force someone to put things into their body that they don't want. Some of us don't have a choice. And we need to stay away, and keep safe for longer because our risks are so much higher. We should all be thoughtful of others as well as ourselves.
Today, Feb 28th 2021, is Rare Disease Day.
Saturday, 23 January 2021
I have spasms a lot, I had one in the hospital while having my IVIG a couple of weeks ago. Thankfully, the nurse knew what to do and slowly massaged me back into feeling again. Today, I had a spasm which glued my forehead to the kitchen cupboard. Ha, it sounds funny, it looked funny, but it isn't really funny for me.
I knew I had a spasm coming, I get warning signs, dizziness, tingling, even a weird feeling in the pit of my stomach. Over the years, I've learned to interpret these as warning signs. I should sit down, rest, try and stop the attack with mindfulness. It sometimes works. I had no warning at the hospital because I'd fallen asleep and woken up in spasm, these cant be prevented unfortunately.
Today's spasm hit while I was cooking lunch. I'd managed to do lunch for everyone and was about to make my own when suddenly the pain in my legs became too intense and I just couldn't hold myself up. I didn't want to fall so I leant against the cupboard, my forehead was resting against the door. But then then spasm hit and I couldn't move. I couldn't lift my head from the door, when I tried it moved slightly and then went straight back like it was pulled by a magnet. I had no control over the rest of my body and my head was holding me up by being stuck to the cupboard. How weird it felt, and looked. Luckily there was family around an my wheelchair fetched. My husband, Graham, had issues trying to get me off the cupboard, my head didn't want to move. My body fell back into the chair, but then he couldn't get my legs to bend onto the foot rests. I was stiff and unbendable. I guess that's why it's called stiff person syndrome. The stiffness is very real. One day, it won't go away. one day it will spread to my organs and they will become stiff and stop working. That day can just wait, I'm not ready yet.
Trust me, there have been times when I've wanted to bang my head against the kitchen cupboard. But it's not the same when it's not a conscious decision and my body just wants to do it for me. Losing control of your body is a scary experience. I don't think I will ever really get used to it.
Then there is the pain. I can't even begin to explain how it feels but it hurts.
I need to get my brain to connect with the rest of my body again and the best way to do that is to move. But I can't move so I need someone to move me. This is not easy for me or for the person trying to move me, but it has to be done. Eventually, my brain reconnects and I'm able to move again. I'm left exhausted and in pain.
This is such a strange condition, with strange symptoms. Even stranger is that because it's so rare it's hard to find someone who feels the same. Yes, we may share some symptoms but everyone seems to be different. I woudln't wish this condition on my worst enemy. I'm so grateful that it's not genetic and I won't be passing it on to my family.
Wednesday, 9 December 2020
Last week I took L to see a new gastroentrologist at the Children's hospital. She's had gastro problems since birth and we've seen Drs and Nurses and tried all sorts of treatments with very little success. Now, she is getting older they seem to be taking her issues more seriously.
A few weeks ago we had a whole three weeks of an upset stomach, which in turn means an upset L and and an upset Mum. We were struggling and couldn't get it under control. I phoned the Dr and samples of blood and feces were sent off for analysis.
Wednesday, 2 December 2020
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.
It's My Life
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.
Saturday, 7 November 2020
I was fine, yes, I had my regular aches and pains. I'd been a chronic migraine sufferer for years but they were definitely related to my hormones. I'd also had some massive stomach pains that were being invesitgated when I got sick. Nothing was really found but they did say that I had a leaky gut, gasses were escaping into other parts of my body, including my womb. These days I imagine my womb as a shrivelled up prune! She served me well giving me five children. It was tough going at times but she's retired now, and so have the hormones.
Chronic Illness and Life
So, even though I'd suffered on and off for many years, it wasn't until I began suffering constantly that life really changed. When I say constantly, I mean, constantly. There is not a moment of any day that I do not feel pain. I sleep a fair bit because I have pills that knock me out, but wake me up and the pain is still there. Day and night, night and day, every single minute.
I think this is what is so difficult to understand for most people. We all get sick, right? That throbbing migraine that has you lying down in a darkened room thinking that you just can't carry on is the bane of your life. But you know that it will go away. You will be okay. The pain will go and you will function again. phew.
You get a cold and your head throbs, your nose runs, you can't stop sneezing. You cough and cough and it stops you sleeping. You sweat and ache and feel like hell. But it passes. A few days later you can be jumping in the car or on the bus and off to the shops, or to visit friends. (Well, maybe not in lockdown, but in normal times.)
Can you imagine not getting better?
It's hard isn't it.
I Was Told I Would Get Better
Accepting My Fate
Friday, 30 October 2020
So, I've not written here in ages. I guess I wanted to keep L's life a little more private as she got older. But we are still on a long journey with her health and I think it needs a place to be recorded.
I have also decided that this would be a good place to write about my own chronic illness. It's a difficult time right now and people are always looking for connections and help.
I don't know if I can help anyone, but I do want to share my story and if you can relate to any part then please feel free to get in touch to talk about it.
As I've not written here in a long time I will start with a recap. I'll try and keep it brief, but it's not a short story.
First up, L's Story
But L is More than Poo!
Mum and Daughter
I'm not a doctor and can only write from my own experience and the experiences I've collected from speaking to others. If you belie...
I've realised that I've focused a lot on Lucy's problems in this blog and I have kind of neglected talking about her autism. Thi...
Last year we had a letter from the school about a residential trip that is taking place in February. I threw the letter away, my first inst...
Lucy was first admitted to hospital in August. She had been diagnosed as having a rotary subluxation of the atlanto occipital joint. Now, I ...