The continuing saga of my RA journey

I wish I was blessed with the ability to remain positive but I just ain't one of those people. When the steroid injection wore off I chased the hospital up for my Methotrexate prescription, knowing that it takes up to 12 weeks to kick in I wondered what the heck I was going to do in the meantime for some sort of relief as I couldn't have another injection. Any road up I got it and picked up my tablets on Christmas Eve. I got them out the packet, looked at them, put them back. Then decided I would wait until Monday so that I could have a drink on Christmas Day and some family were coming on Boxing Day I didn't want to be bad and any more miserable than I was already.. So I couldn't be that desperate could I?

Christmas Day and Boxing Day passed in a fog. Everything in slow motion and I felt like I had withdrawn right inside myself. I still went out to work, did what I could and "acted" normal. All the time I wanted to scream. No-one had any time for me. My partner was so busy on the farm, had started lambing, the kids were busy visiting people and boy/girlfriends family, doing stuff. I was just shuffling along on my own, wallowing in self pity, crying at the drop of a hat, in pain. I spent an hour every morning, hot, shower, piling creams on my joints, waiting for the spirit to move me into action, I was so lonely.

Yet it seemed such a big decision to take the bloody tablets. I kept reading the instruction leaflet and looking on the internet trying to find out all about them. It all sounded so horrendous. I don,t even like taking paracetamol and here I was chucking painkillers down my throat like they were going out of fashion and about to embark on a course of tablets so toxic... to start taking them meant facing up to the fact that I had the disease an it was all real. To realise things would never be the same again. And no-one was interested. I had all this going on inside me and no-one to talk to about it. The NRAS forum, was the only place I could speak my mined. All the good advice and messages of support got me out of my hole helped me through those dark days. I had to take this disease my the scruff of the neck and start doing some thing about it

It took me until the Tuesday to finally decide to take them. Tuesday 28th December 2010. No going back. Could no longer kid myself that perhaps it wasn't RA hoping and thinking it might be something else? No such flipping luck.

11 Replies

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  • Hi Julie,

    It's a hard call isn't it?! Without the drugs we risk a life of crippling joint damage, with the drugs we may experience undesirable side effects. Ya takes ya pick! Bit of a gamble either way but in my opinion no real choice. Uncontrolled disease causes so many long term problems and not an option worth considering.

    Accepting a chronic condition opens the way to an improved lifestyle. Okay, it has its limitations but focusing on what we can still do rather than what we can't adds a whole new perspective. Anyone choosing not to accept their lot is only fooling themselves in the short term. Better to accept and move on rather than sit and wonder the 'what ifs'!

    The forum is a wonderful place where everyone can chat, make friends and acquire lots of information from the real life experiences of others. I think the support there is second to none and valuable to anyone with RA. My friends there are real friends who understand how we feel and that alone is worth so much.

    Julie, you have done brilliantly! You should give yourself a pat on the back :) Life on the farm is especially hard for you but you are getting there. Well done you!

  • Thank you so much Lyn. I think a lot of it is to do with the family wanting me back the way I was. My daughter is having a tough time accepting it., She has always said I am never to get old and has kept me in Oil of Olay trying to keep me look younger for years! She hates to see me in pain and is in denial....and my partner thinks I shall be back to normal soon, once the tablets have kicked in. I know I shall get to a place where perhaps I am comfortable but I am never going to be the same again. You are right and forum has made a big difference to me and helped me cope. Thanks again.

  • Julie, you sound just like I did 3 yrs ago - wanting thing to improve but scared about making the leap into a world of medication as that somehow meant I was admitting defeat. My RA is managed with 15mg Methotrexate injections (I couldn't tolerate the pills) and the difference has been amazing. Ok, I do have side effects and occassionally need painkillers and a steroid boost, especially during the winter months (I'm just recovering from a flare) but I just wanted you to know that things will be better than they are now! We all have our dark days but somehow we make it through.

    My daughter was 5 and my son was 1, when I was diagnosed. Luckily he doesn't know any different but for my daughter it has been a difficult time. She'd just started school and I became unwell, there were people in our lives we didn't really know or expect to be there at a time of big changes for her and I still feel guilty now that I'm not 'her mummy' anymore. I also have people close to me who think I'm fine and as I don't show any outward signs of RA when they see me, so there must be nothing wrong anymore...how sadly mistaken they are?! I have learnt sometimes it is better to keep going than to give in. I have also learnt to ask for help when I need it and leave stuff that isn't vital to someone else to do. The more you battle on with doing things the less people will realise that you are struggling!

    Take care of yourself Julie. I've discovered Me Time thanks to the RA- I don't think I'd have ever thought about spending the day reading a good book tucked up in bed with a cuppa if I'd not become ill :)

    Jo x

  • Oh how I identify with what you are saying, I'm sick of trying to explain what RA does to you. I just keep telling people I'm fine.

    I'm so sorry you are having such a hard time, at least I have the good fortune to have been able to retire RA, and just concentrate on me and the grandchildren.

    take care.

    Wonky x

  • Thanks Wonkey and Emandedmum. I appreciate all you say and you have both been through so much too. I know the MX is starting to work. Saw the doctor yesterday for terrrible back pain, and this god awful tiredness. She suggested I factor in a snooze during the day! Nice thought, but impractical at the moment. I can't just stop what I do, my partner couldn't do it, as he has no time left for anything else as it is. He is absolutely tattered. But something is going to give soon, it has to, and changes will have to be made. Just waiting for the S*** to hit the fan is depressing. All this and like you Say Em I don't even look ill. I was quite deflated the yesterday when someone I hadn't seen for a while said "My word you are looking well"!! (Outside the doctors too!) How sad is that! I must have looked awful before I got RA! I'll get there eventually, whatever and whenever "there" is, so long as I can vent my frustrations on here and get the support I have been getting from the NRAS website. Take care y'all x

  • You're welcome, always. I think it's a terribly difficult thing to come to terms with and in the early days you feel like it's never going to improve but it does and it will. When everything else carries on regardless you feel like you're being left behind and forgotten about. I look back now and realise I'm so much better than I was and that I've come a long way in a relatively short amount of time. I am actually quite lucky to have been diagnosed and treated so quickly after the onset. It's like they say though, you take two steps forward and one step back all the time. I too have been told to lie down to help my bad back! I'm in agony all day every day and with two children and a house to run it isn't always practical to take time out. Also I find I've been so much worse during the winter months, today the sun shone and I actually felt positive for the first time in ages!

  • I was embarrassed for months hobbling around feeling like a wimp and not knowing what was wrong with me. I even felt guilty going to the doctor -- like he thought I was just shopping for painkillers or something. At work, I'm glad to look healthy. At home, I worry that the inability to pitch in more is going to get old quick. And there's a lifetime of this ahead? Something has to give. Hopefully starting Mx next week. . .

  • Oh Jen I recognise every word you say. Especially the limpy wimpy bit. I remember being taken to our local Indian Restaurant run by my partners old school friend. First time he had met me. So felt on show a bit. When I had to go to the ladies I couldn't straighten up, couldn't walk, kiss my botty or anything. I am older than my partner and a even more older than his ex wife, so it looked as if he had swapped a young model for a geriatric! I felt such a plonker, everyone watching all that. Also I thought my doctor thought I was hypochondriacal (my word not the Oxford English Dictionary) so I changed doctors! Hmmm and the family ...... well I feel they begin to think, "ok you have been ill now it's time to get better!" So good luck with the Mx.

  • More empathy... my mother had RA, so I had some rather misplaced insights into the disease. Of course things have changed a lot since then and thanks to the anti-TNF treatment I dont have distorted hands etc. But when I was first diagnosed I asked them if they could eliminate RA - sadly they couldnt!!

    But fatigue is a big problem, and sometimes, like today, I will just sit at a table with my head in my hands for a few minutes and just sink down inside myself. You're in a sleep like state, and I often feel quite renewed afterwards. Better than nothing anyway!

    I often find that if I'm going to do something I've never done before - go somewhere etc - I get terribly tense. Will there be obstacles I cant manage? No loo (my medication often involves unpredictable quick dashes - ) ? So sometimes if I can get my husband to explore before hand, that helps so that I know what to expect. I have found that living somewhere where there's lots to see and quite a few places to visit, helps me to get out and keep up my autonomy! Good luck, it can get better!

    Cathie

  • cant add much more and as i am reading im saying to my self, yes thats true thats how i feel, because you dont look ill people dont understand when you tell them you have RA they say yes my gran had that and she worked till she was 80, but we know the pain dont we. im on MX my day is mon diclofenac folic acid. i wanted to try and do without the MX but dont know now i dont feel my doctor is any help dont think they know much about it themselfs. its good to read about other people in the same boat as yourself hope we all have a good day sun is out in bonnie scotland i might manage a walk along the shore with always makes me feel better sylvia

  • Hi Cathie and Sylvia. It is good to hear from others and see that someone understands what you are going through or have been through. I think Sylvia you should try and stick with the MX. I used to imagine that changing my lifestyle what I ate and what I did would all help and I am not saying it won't help but at the end of the day it the drugs that keep the disease at bay. I had awful trouble coming to terms with taking it, I hate taking tablets of any sort. Now I have this long line of pills I take every morning, but I know without them I would not be as good as I am now. Do you not have a rheumatologist nurse to contact about your treatment? If not get the consultant's secretary to sort you something out. You should be fully informed about your options and the effect each drug has on you. Good Luck. A walk along the shore sounds brilliant. I only live about 30 minutes away from the sea, but hardly get time to go there. Never mind the sun is shining now and it certainly cheers you upl.x

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