You started the ball rolling I think I've Kicked the ball into touch,

You started the ball rolling I think I've Kicked the ball into touch,

I'm a patient person normally, but this last month hasn't been normal, having put my body through an enforced flare, stopping the Humira and now MTX as the bloods are off the scale. For those not aware having Op on Thursday as Ulnar nerve trapped.

Well I had a heart to heart with hubs as he caught me washing my hair in the sink as my shoulders were so bad I couldn't move them. He hadn't realised that at times the pain and stiffness was so bad I've had to just do a strip down wash. yet we have a beautiful bathroom with walkin shower downstairs on the middle floor. Thats when Iv'e realised that the house has got to be adapted to me, or we move.Once I knew that there has been no stopping me, I've had the house valued last week, and asked the estate agent to send details on bungalows. Then Iv'e popped into the N'able shop I had a look at one of the blow up /down bath seats, and much more I had the chappy from Stannah stair lifts in to look at the stairs. So I have a lot of searching to do within myself as well, we have a lovely bedroom an attic conversion with en suite with bath hence bath seat,the view is lovely we can see right over the Clopton Hill and in any season you can stand and look out at the wonderful scenery, but to get there is 2 flights of stairs not good.

So move downstairs you say. I will then have to have the bedroom downstairs funished and decorated so more expense, The furniture upstairs was flat packed and built up there. The bed was even taken off it's frame and put together. If we move to the bedroom downstairs we will have the benefit of the walk in shower on the same floor as me. So very confused as to what to do.

Then I've been off work for a month now, and I don't get paid any sick pay just SSP for 26 weeks. Then I'm not really sure if I should go back or even worse want to go back to work Do you get the picture I'm JUST NOT SURE

Tricia x

11 Replies

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  • ooh tricia.. if you can get over this flare. the stairs might er come possible?. I couldnt do stairs for four days until I Started steroids,, its because you had to stop meds... shows humira works..., I had stop all meds including steroids as I had an endoscopy.. my flare which had just started.. moved skywards....

    I cant afford to move... you do the best for you my dear.. and the best might well change and hopefully for the better(been off work 3 weeks too x_) you must not go back before you are better , i pushed myself to the limit in feb and made myself ten times worse now... dont do it. I have learnt the hard way

    alison x ,ps had social services put up rails have curved case it had nothing to hold for a distance of four steps.. now have a full length rail in one side...

    free of charge cos of need.. ask your hospital Occupational therapist/ social services.

  • Ali I've been waiting for ages for an OT, I decided that we wouldn't be able to have anyone as we have managed to save a bit, and hubs has a pension from being in the army. I bought one of the clamp down rails which is in the bathroom downstairs. It sounds terrible all this room we have but we have been in the house for 24 years. before that time I'd moved 26 times as dad was in the army as well. we bought the house and hubs moved round us the kids have now gone but we are positioned so well near all shops and 20 mins walk to town (i haven't done that for a few years). I think I'm winding myself up for this op a bit frightened, so thanks for the tip about OT/SS I'll try and get hold of them

    Tx

  • Hi Tricia

    STOP! It's great getting all the info together and working out options but whilst you aren't particularly well and with the op. pending now is not the time to be making crucial decisions such as this.

    You have a fab home (sounds really wonderful) and moving would be a real wrench. Sometimes it is best to stay and adapt, although I appreciate that too can be costly. Moving is hellish stressful and you really need to be in top form for house-hunting, packing up, dealing with solicitors, sorting your new home and that's if things go straight forward. Do they ever?

    Likewise with work. You can't make these decisions now ... you might get it wrong! See how you go on with the op, get back on the meds as quickly as possible and then review. Until then don't even think about it! No-one knows how the op. will go (although I'm sure it will be a success :) ), there's no way of knowing whether the Humira and Methotrexate will kick back in at its previous level (sometimes after a break it can be less effective).

    Too much for now Tricia ... just eat some Smarties :) Will be thinking about you on Thursday. Good luck and keep us posted :)

    Lyn x

  • Hi Tricia, lots going on at the moment so like Lyn said don't make any rash decisions, you may regret them later.

    Try not to worry about op, easier said than done I know. You have to think its for the good and to make you feel better.That's how I get through mine I've had about 11 now, including a total elbow replacement.

    Sounds like you have a beautiful house, I can understand you wanting a bungalow that's what I would love too.

    Concentrate on yourself at the moment though, you can make better decisions when your feeling better, good luck with the op on Thursday.

    Take care

    mand xx

  • Tricia, again have to say Lynn has wise words do not make decisions until things settledown a bit, at one point I could'nt walk more than a few steps. And now I have regained a lot of my mobility so you will probably improve, I think stop & wait a while! Lots of stress in moving. You haveto do what best for you I know, hope your op goes well and you back on meds asap,

  • Tricia take on board what Lyn says, now is not the time to be making major decisions.

    We have just put in a stair lift and walk in shower in mums home, because it has everything she needs, good locality good neighbours.

    Adaptions such as these are way way cheaper and much less stressful than moving. and I am sure we all know what stress does to RA.

    I recently came off meds for carpal tunnel surgery, RA sufferred but now I have no pain in wrist and arm, getting some sleep, and meds kicking in, so it was all worth it.

    Take it one day at a time Tricia, get over the op, re start meds and then see how you feel.

    Take care keep us posted xx

  • Hi Tricia it's me bringing up the rear as usual. What Lyn says is soooo right. Get this op over and get back on the meds. You must be in turmoil me lovely. Step back, take a breath and the very very best of luck on Thursday..

    we shall all be thinking of you.

    Take care Julie x

  • Trica,, my stair rail was free... I work part time... not much of an income... huge nhs salary wink weep wink... but too much to claim any benefits... the stair rail was free on medical need.. im not ashamed to tell you this... your house sounds great...... xx take care

    ali xx

  • Hello my lovlies,

    What would we do with out each other

    Lyn as ever sage advise, do you do counciling, I could do with lying on a couch and let all my angst just fade away.

    This behaviour is probably normal for me, I like to be in control of a situation whether you can physically see it or its a mind thing.

    This time its a mind game so I have shut my mind in the cupboard and try and relax, having hair cut an blowed this morning. So a bit of a pamper.

    Once again thank you all, I do and have taken your advise.

    See you later

    Tx

  • always good advice from lyn, no matter what i worried about i know lyn will help be thinking of you tricia xxx

  • Hi Tricia

    I'm pretty new to this but what I would say is don't put yourself under pressure - there is plenty of time to make the right decisions and eventually they will come to you through choice and not necessity. Always remember though, when you look back, don't ever think that you made the wrong decision as what you did was right at the time and was considered and thought out. We can spend too much time beating ourselves up about a decision that was made under difficult circumstances. And finally, you can always change your mind.... Be kind to yourself xx

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