I was being too optimistic !

I was being too optimistic !

I got up early this morning after having a very disturbed night yet again. I had to get up at 2am with severe hip/pelvic pain, simply could not lie in bed. Took painkillers and crawled back to bed at 4am. Anyway, had to be up by 8am as a Tesco delivery expected, and also hubby was going over to collect grandson for a boys day out, they have gone to see The Hobbit at new IMAX cinema in town.

I had made up my mind that I was going to say blow it to my pain and fatigue and I was going to do housework and get the carpet shampooed. Well that must have been a mystical fantasy my brain dreamed up !!! Because here I am now slumped in my chair desperately trying to muster up some energy to even think about cleaning the wretched carpet. My 90'yr old father came Saturday (he's fit and very sprightly unlike his wreck of a daughter) and he trod his dirty shoes all over our cream lounge carpet, I could have murdered him !! Hence the need for shampoo. When hubby returns this afternoon he will be expecting a gleaming shiny house, with clean carpets rac. Think he is in for a shock, because I don't have the strength to push the heavy carpet machine, it's just impossible. As I say I had full intentions to get things done but I have been thwarted once more by my wretched body, so fed up.

My horrendous rash, on my upper body continues to rage and I am still awaiting a dermatology appointment for biopsy. My bloods have come back showing some positivity for lupus but still need this biopsy. Meanwhile I am off MTX still and just taking painkillers and using copious amounts of steroid cream on my rash, together with deep moisture lotion. I am going to try and attach photo of my arm if anyone can bear to look at it.

It's just over four weeks to youngest daughters wedding. How am I going to cope looking like this, I am so upset.

On a lighter note, my lovely Tesco delivery man brought all my shopping into the kitchen for me, putting it all on the work surfaces so I did not have to pick anything up off floor, how wonderful is that ? Lynda xx. Ps - please take no notice of the half eaten yogurty rice cake on the pic. Haha.

5 Replies

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  • Please try to take it easy. I know that's not what your inner self wants to hear when it's almost Christmas Day, but your poor body is screaming at you to STOP! I know there's a lot to do, but carpet shampooing is not one of them when you're not well. Trust me, nobody will be looking at your carpet. I had the same dilemma last week (I have a 90 year old Mum living with us and a 93 year old father in law visiting. Best to get it cleaned AFTER Christmas which is what I'm doing. Hope you feel a little better tomorrow and get your rash sorted out soon (have you asked your GP about antihistamines?). Best wishes for Christmas and a hopefully better new year. Angela x

  • Hi Angela, I really did so much just want to get on with things today while on my own, but sadly not to be. My son just rang and he is coming round when he finishes work at 2 pm and he is going to clean carpet for me, bless him !!

    I have got antihistamines but they grogg me up so badly I am reluctant to take them.

    I have had this rash for three months now, started on my back, then spread over my arms and chest. My new Rheumy thinks I may have been mis diagnosed nine years ago when I was told I had RA, he thinks it may we'll be lupus or psoriatic arthritis, hence the skin biopsy.

    I am just now debating whether to struggle to the washing line and hang washing out, hubby usually does this for me. Having a day on my own has made me realise just physically,limited I am. Oh well .... Lynda xx

  • I was about to reply but I would only be echoing Angela's reply but how nice of your son! I was also going to say try not to be superwoman, ever one will pitch in & that way you'll be able to enjoy the festivities rather than wishing it would all go away because you've done too much.

    One other thing Lynda, I know you've probably exaggerated a tad saying you're using copious amounts of steroid cream but that shouldn't really be necessary. It also could have an unwanted effect of thinning the skin so try to moisturise more than use more steroid cream more than is directed. Hope you don't mind me mentioning but been there & it's a nuisance now. ;)

  • Lynda it does look sore but I really wish you wouldn't worry about how it will look for the wedding because it will be a proud and lovely celebration whatever you or anyone else looks like and the fretting will only make things worse. I used steroid cream including powerful Dermovate from a young age to my mid 40s in an effort to control my skin problems (mostly eczema). If I didn't use those the weeping cracks would become infected and so I felt I had to do what I was told as I had blood poisoning twice from this. Now my skin is clear but it is sensitive and paper thin - especially on my face. So yours looks relatively benign and not disgusting at all - you will be far more aware of it than others are and at this time of year arms and legs are usually covered anyhow - but just stick to pure cotton if possible so it doesn't aggravate your skin further.

    For your interest I was told that I was very unlikely to have Lupus as a post menopausal, post childbearing age woman (51) because I didn't have any lung or kidney involvement - which he felt I certainly would have by now. The connective tissue professor who said this and confirmed RA from photos earlier this year, also told me, and wrote in his letter to my GP - that Lupus usually gets better post menopausally and he felt on this basis (rather than my negative bloods which he dismissed) I just had a broad and very autoimmune type of RA with Sjogren's and Raynauds as secondaries. Obviously your positive antibodies do count for something and skin will too but I just thought this might be helpful to you anyway. A handful of friends from Lupus UK disagre strongly with what he told me from their experiences - and still think that I may well have SLE rather than RA - but he was very adamant.

    Glad your son was able to help with the carpet too!

    Tx

  • Ha ha Lynda I did wonder what the bite shaped thing was next to your arm. Ouch that looks sore! My hubbie has a similar thing though his isn't sore or hot. Dermatology didn't know what it was. He had 2 biopsies. He doesn't have any healrh conditions though. I had lupus antibodies for years in my blood. Since being on Rituximab they have gone away. I am I'm the sàme situation as you. I have all the ingredients for a Christmas cake and stollen had them ages but still not found the energy to make them. I've got a cough/ cold and been feeling bleugh so today chilling out. I would leave the carpet and ask your hubb to do it when he comes home. Put yourself first. Take care and merry Christmas x