Today I read a post in which Lulul declared her acceptance of the fact that she had RA. I am 12 months down the line and suppose I could say I'm nearly there. It made me think of the things that I had done along the way to compensate and which were far more numerous than I had remembered!
My long saught after and loved cast iron pans have been relegated to the back of the cupboard (put there by my husband spurred on by moans and groans when trying to move them). Some of them used to sit proudly on the hob until I (insistant that I would manage) nearly dropped one full of hot liquid.
My little sports car has been replaced by a 'more sensible' Nissan Juke (which is fab, I might add!!) and now I can get in and out of the car without the aid of pulleys and winches.
I now have a memory foam mattress - very comfortable and a bit more gentle on the hips.
I have special dipensation at band practice to play without my mutes as this makes my instrment too heavy to hold up and play. They drew the line at a 'prop' to support it!!
I have a trolley in my boot so that I can carry things too and from the car which I then had to replace with a lighter version so that I could get it into the car in the first place.
I miss walking the dog for miles and miles - Ii used to go off for hours on a Sunday morning with my nutter of a dog - who still keeps me sane and who dosn't treat me any differently. I can still walk pretty well but boy do I pay for it.
i can carry diddly squat.
I started on Embrel a couple of weeks ago and although there has been no difference yet, I am hopeful that it will kick in over the next few weeks and make a difference. I have to be positive about it and give it a chance.
You may be asking by now what my blessings are - well, a new car, a new bed, new saucepans, a nice trolley, lie ins on a sunday morning while my husband takes the dog for a walk, I can still play in my beloved band(s) and I haven't exhausted all the treatment possibilities. In the words of another fan: RA Pride!!
Caroline
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caroline777
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My biggest blessing (apart from my wonderful partner who tries to understand this confusing disease) are taxis! I'm lucky enough to live in a city small enough for me to be able to afford to take taxis when I go somewhere there isnt a convenient bus. Maybe two or three times a week. Taxi drivers are mainly really kind and know someone with RA and pride themselves in helping you in and out of the cab. Not everyone can afford taxis, but for me its a great substitute for having a car. I've always worried about my fatigue affecting my driving. And taxis are a great place for unusual conversations too.
Hi Caroline, acceptance can take a long time but doesn't it feel good when you get there!! Making all those adaptions and gadgets part of our life is all part of it, we shouldn't have to suffer when we can make life a little easier for ourselves.
I too miss walking the dog, it's something I did everyday but like you say the dog doesn't treat me any different! still loves me as her owner. ahhh !!
I hope the Enbrel works for you, it did for me for a while and i now it works for many others on here.
Hi both of you. I too am blessed with a very caring husband and also the fact that we were in a position to buy a new car and bed etc etc. I still work and drive a lot of miles to keep working. My boss is another blessing. I am lucky enough to work for a private healthcare organisation and I can always stay over if the fatigue gets too much although I am finding it hits me very suddenly sometimes so i need to take care with the driving.
It has now become a personal challenge to try and keep one step ahead!! I might not win but I can collapse into bed trying!! Chuckle. xxx
Hi Caroline. Good blog. I have been having a conversation with my OT this afternoon and wish to goodness I had been able to do so much earlier in my diagnosis. She was saying about adapting, little changes you do to cope and learning to accept them as the norm and I think I am getting there too. I really didn;t have a clue where I fitted into the RA spectrum. Now I know that it is so wide and so varied and so individual only time and experience will get you there. Love your approach.
Well done for getting to this point so quickly. I have had RA for 3 1/2 years and I am only just beginning to accept it. Reading your blog made me realise some more of the positives. I had already thought that having to give up work because of RA means I will get to spend a lot more time with the children while they are young. I too have had a lovely new memory foam matress, new trolly and new saucepans. Unfortunately I don't get the lie ins at the weekend - we have 2 early bird children!
Thank you for helping me to see more of the bright side of life.
It must be much harder to accept for you as you are clearly much younger than me and with a couple of young children you have much more to come to terms with. I'm happy you have see some of the positives - I have had some very low times and although I have had some tragedies in my life, I have been able to do loads of stuff and am thankful for that. I hope you get some treatment that works so you can enjoy your time with the children.
Cheers Caroline I always try to think I have RA it doesnt have me. If you see what I mean this way I feel in control and not that its in control of me. Looking on the brighter side is hard but so worth it. My daughters thought it funny when I got a wheeled shopping trolley but now they understand why, just wish one of my wheels didnt keep dropping off. Lol Sharon
Hi Caroline. I have had RA for 9 years and have a wonderful supportive family. I have numerous splints, gadgets and gismos to make life easier and I am generally ok with life. I definitely accept that I have it but not so sure that I accept that I should have it. Maybe that's the next stage for me. Sheila x
Really good to hear you've doing some things to make life easier. I got a new bed too! And an automatic car... a bar stool for the kitchen ... a chopping vegetable attachment for my kenwood and an electric tin opener. Last week considered shopmobility for getting round Southampton shops (which I usually avoid anyway). I also use husband or internet for the food shop!! Also mobilised my teenagers for more active household duties!!
It's so lovely to hear from everyone out there! I hate the thought of so many others going through it though. :(. Couple of things really hit home -'I have RA, it doesn't have me' and also the comment from Sheila about not accepting that she should have RA.
thanks everyone and have a good bank hoiday if you can.
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