As many of you already know, C has a chronic illness, she has ME and Fibromyalgia, and more recently IIH. My poor baby really has suffered, missing her teenage years.
For some of you who have been following me right from the start. You would have shared our journey of her being a normal happy child, leaving primary school and heading towards secondary school. And would have shared her first term as a ‘normal’ child settling into a new way of life.
You would also have shared the moment she became ill, the battles, the tears, right up to today. Where I feel we are adding another journey.
A Little Roundup
C became ill at 11.45pm on 31st December a time that will never leave me. We were at friends at a party and she came up to me and said her legs hurt and she collapsed in my arms. I got her to a seat and sat with her. We finally got diagnosed 3 months later and it has been a constant battle ever since. Many GP’s and Consultants have no understanding of Chronic Illness. Now we pay privately to see an amazing Consultant, people travel all over the country to see him.
In November last year C started complaining of abdominal pains, she has had them on and off but these were getting worse and constant. We went to our GP and she was referred to an ultra sound which showed nothing. After seeing our GP again a few times we were told it would go. C was becoming worse so I contacted our Consultant who saw her and said about an MRI, so we paid for one privately. This showed her gallbladder was inflamed. We ended up in A&E and after 7 hours were sent home. We were back 4 days later and after a 5 hour wait she was admitted. I never realised how ill she was but she had an infection which was now affecting her organs. I was angry and scared, luckily the antibiotics worked and she came home.
We now see a lovely Consultant for this, but unfortunately lockdown started and so everything else has had to stop. She arranged a CT scan that had to be cancelled, but we finally had one two weeks ago. I am discussing the results later today but know it showed everything was clear. C on the other hand is in so much pain, this also has an effect on her chronic illness causing her to be in a constant crash.
Thinking of causes
As anyone knows Mums are great at finding things out, just ask all three of my kids. I have sat on google and one thing keeps coming up intolerance. I am leaning more to lactose intolerance so will be asking for tests on things. After talking to other parents of children with chronic illness, I have found this is common in people with long term health problems. If this is what is wrong, at least we can sort it and she will get relief for once.
It was clear very early on that C could no longer walk far anymore. She went through periods of not being able to walk downstairs. The amount of times she has collapsed on us, or we have found her on the floor. Going out was not possible as he could not walk. We took the decision to buy our own wheelchair, and this made life so much easier for us all. Although I am still crashing into things, so not great at pushing it. The only downside to it, is that it weighs a ton, getting it in and out of the car is a huge struggle for me.
We have been talking recently about getting a new wheelchair, that is lighter but just as sturdy. As we hope in time she will be well enough to go out, we have been looking at Self Propelled Wheelchairs, that are lighter but just as sturdy. Which I think will make everyones life a bit easier.
Having a wheelchair that fits your requirements is a life changer, it means you can go out and about. You are not confirmed to your home.