One short story of a remarkable young lady with rheumatoid arthritis, on Rheumatoid Awareness Day. this young lady Christine Robinson Twinkle has a lovely Child called Amber who as Autism.
Despite unable to walk or move some days, Christine spends a lot of time bringing Autism to the front of our minds. Christine asked me whether she should fluff it up for this story. I said no tell it as it is.
Christine also is doing fund raising for Autism Awareness month, April. When Leeds arena will light up blue, 2nd April and 20th April Ambers Birthday.
Here is Christine short story on this Awareness day.
Rheumatoid Awareness Day! That’s one of my diseases which I usually neglect as I’m busy with the autism! It’s a different kind of awareness for this though, Autism can be celebrated and appreciated, Rheumatism wasting out of place.
It’s almost my 10 year anniversary of being diagnosed with RA and to mark the awareness day I’ll explain a little of my story.
I remember waking up one day and my fingers were stiff and blue. It was difficult to hold my morning cuppa and there was no reason for it. The stiffness didn’t let up for a couple of days so I went to see my GP and he asked if I’d sprained them somehow. I smiled and wondered what event you would sprain all of your fingers, I told him no and I was sent away to come back in 4 weeks if it wasn’t better.
After 8 weeks and returning twice, seeing nothing had changed he took a blood test. Explaining he was look at my Rheumatoid Factor. We all have one, but if its over a certain number then you have Rheumatism. As it turned out mine was ok. I was sent home again but the problem still persisted. Eventually my GP sent me for an appointment at Chapel Allerton Hospital.
Just before this I had, what I didn’t know then, was an horrendous flare up. I remember it clearly. I started to wake up and heard myself whining. I then went from sleepy to awake in 0.1 second and felt an indescribable pain. I couldn’t move one of my legs. It wouldn’t bend, it wouldn’t lift, I couldn’t turn to get out of bed. My partner rushed in wondering what was wrong and when I looked there was a massive swelling at the side of my knee cap. He got me upright but I couldn’t stand on it, a pain burnt through my knee and up and down my leg. I was scared..I hadn’t fallen or banged it, it literally came out of nowhere.
Chapel Allerton Hospital quickly diagnosed me as having Rhuematiod Arthritis. I asked if it was right seeing as my Rhuematiod Factor was ok…apparently that isn’t always a reliable indicator..great! I was put on medication that made me ill. So, so sick. My weight plummeted to less than 8 stone,I was constantly tired and 4 out of 7 days I would throw up or feel sick. No one really tells you how bad the meds are, but they can be harder to cope with than the actual disease. It’s rough. Lots of med changes later and my disease is still active. One of my wrists is out of place and losing bone. 4 of my toe joints have been removed as a “pain reducing” operation. They couldn’t replace the joints as the bones in my feet aren’t stable enough.
I remember going to an appointment one and it was a different consultant than my usual one. He blatantly told me “if we do not control this disease you will be in a wheelchair in 20 years” … That would be by the time I’m 50. Not a nice thought at all.
Having this disease while looking after young children is also hard..I’m not going to lie I can feel like a failure. My oldest is 15, he’s had to come and pick me up off the floor a couple of times..also watch his brother and sister once when I fainted from meds and pain. When I was coming round I heard my middle son, Halen 8 ask him if I was dead. Halen is most sensitive to my illness…if I’m having a bad day he will tell his friends when they call for him that he’s not going out “I’m looking after my mum”he says and sits with me, i don’t ask him to! I tell him it’s ok he can go play out. Amber acts oblivious, but I know she takes a lot in and I wonder what she thinks about it all.
My worst experience hands down was 3 years ago, Christmas Day. The kids were at their dads and were due home at 12am. I got up and 6 and that familiar whine passed my lips. My whole foot was solid, twice it’s size and the worst agony I’ve felt. I struggled down stairs took my pain killers and prayed they’d kick in. I had too much to do! It was Christmas Day for god sake! I toughed it out for a couple of hours, the painkillers did nothing and I was still screaming the house down. I gave in and went to A&E got seen quickly and was giving morphine. Well that sorted the pain out..it also meant I was asleep on the sofa most of the day, incoherent and can’t remember any of it. I had the worst shame hangover ever the next morning. How could I have missed Christmas Day , what on earth would my kids think opening their presents with me rambling on the sofa. I was genuinely heartbroken I’d done that to them.
It’s hard to be positive about something that disrupts your life so much, changes everything, constant pain so that you get used to it in a way. Then there’s the not knowing why…I hate not knowing why. Will there be a cure in time to save so many? Will I end up in a wheelchair when I’m 50? I hope not. You have to take an everyday attitude, the future can wait til we get there, if I can smile today that’s good enough