Arthritis sucks!
Next week happens to be Rheumatoid Arthritis Awareness week (15th-21st June) and you might think that after our light-hearted post about celebrating Iced Tea Day, that I thought it would be appropriate to also highlight something more serious and important. But that's not the case - it's simply that last night and today we are just fed up. Fed up of living with arthritis. Both me and Miss T.
I know I'm going to hover over that publish button deciding whether to hit publish or delete at the end of the post as my blog is usually my 'happy place' to escape to, but right now I need to rant.
For 2 days I've had to send D walking to school on his own. I hate doing it as the traffic is so bad around the school in the morning and although he's a sensible lad, I still worry. He hates going alone but I've have no choice. My back feels on the verge of a flare up and I know if I push Miss T in her buggy, it will trigger the flare up and I'll be likely to be out of action solidly for a week or two. I can't let that happen.
The benefit of having lived with arthritis for 27 years is that I can sense this type of flare up coming. I think of 3 main types of pain with my arthritis - A general stiffness that can happen out of the blue and can be longer lasting (for that the GOPO rosehip supplement has really helped a lot), the second is a constant pain in my lower back when I've over done things - can last from a day to a week - my arcoxia tablets seem to help with that type of pain. I think technically that is more of a lower back pain rather than specifically arthritis but it gets triggered because of my arthritis because of the way my hip can't move properly and how my back compensates for that. The third type is what I feel is happening now. Sharp pains that come with any 'wrong' move. If I make a wrong move or do something that could fully trigger it, like pushing T in her buggy, then the pain becomes solid until it recovers. Can take anything from 3-4 days up to a month or so.
The trouble is that Miss T cannot walk far without her buggy because of her arthritis. So we are left in this kind of catch 22 situation and I haven't a clue how to handle it.
D's school suggested asking friends to help out but I hate having to be reliant on others.
My next worry for today is Miss T's temperature went up last night and with the Methotrexate she is on that can be very dangerous for her. So we've been monitoring her closely and the nurse advised to get her checked urgently by the GP this morning. At the moment she's doing ok as we can get her temperature down. But I can't help worrying.
She's been on Methotrexate (MTX) for 7 weeks now so I am truly glad this is the first temperature she's had during that time but my fear is that it is the first of many. She'll be on MTX for at least the next couple of years and I dread to think what things will be like over the winter months when bugs are rife.
Prayers for Miss T appreciated. And rant over.
And because I can't bear for this to be a purely negative whinging post, here are some links to our recent lovely holiday. Our happy times:
http://thebeesleybuzz.blogspot.co.uk/2015/06/our-first-taste-of-glamping.html
http://thebeesleybuzz.blogspot.co.uk/2015/06/our-featherdown-farm-diary.html
Labels:
#RuAware,
Arthritis,
Childhood arthritis,
JIA,
methotrexate,
MTX treatment,
rheumatoid arthritis
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Sending hugs and temperature-lowering-thoughts to you. Wish there was some way of removing the pain for both of you :( xx
ReplyDeletethanks Steph. x
DeleteAwww I know it's your happy place but it's ok to be your ranting place, sad place or whatever place at all. We are here for you, if only in ears xx I'm sorry things are not so good, I'll send prayers for Miss T, bless her. I do hope she's feeling much better very soon. And the same for you too, I hope your back does not get any worse.
ReplyDeleteDoes your school not have a walking bus? I found ours a great help when I had migraine attacks and couldn't make it all the way to school.
Much love xx, I'm off to catch up on your other posts now x
thank you Anne for your kind words and thoughts. It given me a chance to spend time on the computer at least instead of rushing around all day! x
DeleteI know the thing about not relying on others...but I have also been castigated for not allowing my friends to help! They will want to assist in any way possible....if they ARE friends. I trust things will improve rapidly...and don't worry about ranting, this sort of thing is better ranted about than repressed....
ReplyDeletethanks John - you always have such words of wisdom. x
DeleteIve been living like a bit of an online hermit since january so i had no idea you guys were suffering so much. i wish i lived closer to you guys so we could come and help you out. I cant even begin to imaging what you guys are going through. if you ever need to rant down the phone though I'm always here to listen xx
ReplyDeletethanks Pauly. I don't go on facebook much either these days otherwise i end up spending far too long on there! Hope you are all keeping well. We miss you all! x
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