Hey Hannah!
Reading that was like looking in a mirror to my past. I was born with juvenile rheumatoid arthritis and while my parents didn't wrap me up in cotton, they were protective of me in their own way...
When I got to 15, I'd become so fed up with my arthritis... I just wanted to enjoy life with my friends.... This was when I took the decision to stop wearing my orthotic shoes and calipers...
My parents were ok with this because I'd been wearing them for 8yrs and tended to wear trainers when I went out.
When I was 18 I loved going clubbing, getting dressed up and having fun... My Mum though would be telling me to be careful with alcohol, that it could affect my medication... at the time I was on methotrexate and steroids....
While I wouldn't get drunk, I would get merry but I used to get into huge arguments with my Mum about the time I was staying out, drinking etc.... My arthritis would always be the basis for arguments. This made me hate it even more...
I then took the decision to stop my medication.... I guess I was so angry, I wanted to just feel 'normal', I wanted to enjoy life in the same way my friends did.
My arthritis went downhill very quick, I had a huge flare up and I ended up in hospital. My consultant and parents were at a loss as to why this had happened... They asked if I was taking my medication (my parents passed the responsibility to me when I was 15 to help me feel like an individual rather than someone being looked after) and I told them yes.... Blood tests showed otherwise and again the arguments started.... I told you so etc etc
I managed to get sorted, back on meds and arthritis was ok. But I still wanted to do my own thing yet my Mum was even more protective. It got to the stage where she even took my door key from me so I would be back at a reasonable hour. All I did was sleep in my car on the driveway.
Its so hard enough when you are trying to work with your arthritis and living your life the way you'd like, but when you have other people in your life telling you that you shouldn't be doing this, or doing that. Well its so frustrating!!
For me it wasn't just my arthritis dictating my life, but my Mum was dictating. She used to blame my friends too. I guess she thought I was capable of looking after my arthritis but because of pressure from my friends, I was going against that. It was hard for her to understand that I was being pulled in different directions emotionally... I may have lived with the arthritis for a while but that didn't mean that I had accepted it, or even learnt how to live with it. For me, accepting it was like accepting my life could be over and I didn't want that.
My Mum though was only worrying about me in her own way... She was hiding her real feelings, that she was scared for me
It took me a while to learn compromise with my arthritis.... and to get my parents to understand that. I spose its a bit like thos weightwatcher diets... you get a number of points at the beginning of the week... Depending what you eat dictates the number of points it costs...... If you have a night out planned, a fancy dinner or something, then you hold some of those points back....
Planning is key... If I know that I am going out for a night, say to a club then I will not do much in the day.. other than pamper myself, hot soak in the bath... looking after my joints... I then enjoy myself, let my hair truly down! The next day I plan to take it easy, again pamper my body.. as if to say thanks for a good night out... I've also take pain relief more or less straight away.... this keeps the pain at bay and I don't feel so rough.
Sometimes though planning can be boring... its nice to do something spontaneous which means I don't get the chance to rest first but I definitely make sure I do it the next day. I know from my own experience that friends/boyfriends never would intentionally put your condition at risk... If anything, they would hate to do anything that would make you more conscious but in its own way, that can be risky. Its important for us to make sure they know our limits and while I don't want to make anyone my 'carer' or 'keeper', it means they can perhaps see something I might not...
My pain threshold has increased over the years and I've learnt to work through the lower pain levels... But sometimes my husband or friends can pick up if I'm walking more awkwardly and they'll suggest a sit down... If I go to a club, the first thing my friends do is make sure there is somewhere to sit..... some clubs are fantastic in reserving a table for us, or the bouncers will get me a bar stool...
I'm so glad you and your Dad got to have a hug and a cry.... There will be days when all he's trying to do is protect you and it will come out the wrong way.... I'm 35 and my Mum still does it.. If she knows I'm off for a night out, she'll still call the next day to see how I am...
Helly x
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Helly Copeland