Don’t know where to start !!!
OK in less than a month I will be 60. For over 50 years I have had pain of varying degrees and for varying reasons.
After pain in my back after gymnastics at school that went on for months of being told it was “growing pains”, I was diagnosed with Shuermans? Disease. I had to stop sports, Netball, tennis and, of course, the gym. I was only allowed to swim.
I wore steel corsets every day except when had to have a new one as I had grown, then it was a plaster one. This was my treatment until I was 18. Theye talked about a new brace. Saw it and said no.
For the first I felt free of it. Although had boyfriends before as would be naughty and not wear it on odd day or eves out. But could guarantee would pay for it later.
I got married too young at 18 and got pregnant soon after. The docs worried about how it would affect me later on but funny enough, it was a time I had least pain.
But within weeks the pain was back. I was being told “do not pick up your baby, or carry her.” Did I listen no…of course not.
Jumping forward to my second marriage 10 years later. My spine had been damaged and would have pain and numbness but I had learned to cope. Swimming was my thing and walking even if my leg went numb, I did it. But my husband, even giving me a hug, caused me to collapse with pain unable to walk or move for days. This was diagnosed as A Spondylitis. Neck pain was bad. Two weeks after giving birth to my son, my youngest, I got a slipped disc from just getting up from a chair. I was laid up for 8 weeks. Just missing going in hos for tension weight to pull my back to place and release nerves. From then permanent pain strong pain relief that sometimes worked some not.
Just before the birth of my son, my hands started to hurt, burn, spasm, be weak and hurt to even try to lift. After few months, it was terrible. It is very hard changing nappies when in pain. Doc gave me cortisone injections in both hands to get over fast he said. lol. but friends came in to change my son, carry him for me, luckily he was still small.
I carried on working group when able but found standing extremely difficult. My toes on fire. balls of my feet agony, It was after this told “You have something not sure what. more tests”
So now, just at 30 told it RA. On top the other things I told myself what the hell. I would cope. I would be happy I had my children. I had a husband who loved me at the time and was good support with the children.
Over the next 12 years I coped. I had so many x rays, blood tests, and physio. I kept telling myself I am OK, it could be worse. I was used to pain so bring it on.
They tried Infliximib. It did not work but it did agrivate the Osteo I had recently been diagnosed with. My right hip pain gone from spasmodical to all the time. Then tried me on Humira self injecting. Was OK but not notice how well it did or not work as pain hip got worse. Even on morphine as last resort it hurt, grated and leg painfully to move. I was told needed a hip replacement urgently. Yay some pain. 6/8 weeks they said. Great. Well would have been had the RA nurse had sent the referral to the surgeon. Saw RA consultant 5 months later ñ Nov wanted to know why using a stick. Duh hip hurts I replied. Totally shock to find not chased up then fuming to find not sent. He rushed appointment to surgeon. But I had been diagnosed with cancer in the August. My doc, consultant, and my family all hoped would get hip done soon. Cancer consult held off till Dec 14th to start chemo. Got apps to see surgeon for 23rd. I had just finished my first 24/7 chemo treatment using pump. He would have had me in that week as it so bad but could not risk it.
So I had radiotherapy for 8 weeks in total agony. Uncalled for agony. The getting on and off the table made my head spin. But problem made worse but my reaction to the chemo. I had a massive saddle pulmonary embolism and nearly died. No more chemo so extra radiotherapy. But was in so much pain by then just thought that’s out the way phew. Also no more Humira or methotrexate. So extra morphine. I had to wait a year before they could risk operating.
Then yay got right hip done. It was wonderful. Though still in pain from other things it was such a relief. And had divorced a few years earlier due to his adultery and saying I couldn’t divorce him as no one else would have me as I was. Huh rather be alone.
By this time, my other hip had worn out so needed replacement too. Tried me on rhuiximib didn’t work. Then new lot of PEs so op delayed. Again. The RA getting progressively worse. Neck elbows wrists knees in a big way. Knees giving way so falling. Trying to use sticks but make hands hurt so oooooohhhh much. Soo tired.
After all, thought thing can’t get worse so went on holiday with my sister mmmmmmm not good idea. Hip dislocated on last day. In France. Home by ambulance all the way. OK for me. I slept. My poor sister sat all the way.
So to date I am on Toxilimib? It seems to help more than any of the others or is that my mobility so little now I don’t push it any more. I rest most of the day. I eat little and often. I never thought I could feel worse than I did when treating get cancer. But I do. But I also know nothing else. Have been in pain for 50 of my 60 years. But have 3 brilliant children, 4 grand children, one who lives with me.
With this lessened mobility more so in the last year. My friends have filtered away as not cope with my increased pain and tiredness. I laugh it off and try to be how I was even last year but it not work. I am happy ish, resolved ish. Having my granddaughter here keeps me young as she 17. She comes to the hos with me when not at college. I self injecting on a once weekly basis the Toxilimib. I felt good as long as it do a lot. I feel normal at home as can and do feel safe. Going out not so much. Unless with someone. But through it all I am still a teenager in my head as sometimes think that’s were I was at my best. Sorry so long.
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