In between cleaning, cooking and writing an art review;Severe RA v Mild RA (RA Warrior blog)

In between cleaning, cooking and writing an art review;Severe RA v Mild RA (RA Warrior blog)

rawarrior.com/severe-rheuma...

Always mindful that I describe myself as having mild RA I spotted this while searching for brief explanations to give friends tonight if I seem well and able - which it looks like i might do (here's hoping). I think that one couple might start asking if I'm cured of my arthritis so wanted to know what to say about the systemic part that makes us feel so tired. Mind you I really don't want to say more than is absolutely necessary about RA tonight but will wear my splints as wrists are twanging in a familiar way and need support for clearing dishes etc.

And so I came across this RA Warrior blog from 2010. I thought how relevant it is to me just now. A friend told me I should put a sign up on my wall saying "I have RA" for myself so I might actually stop giving myself such a hard time. This got through. Today my hands and feet are aching and my usual two fingers are swollen and bruised looking and my right wrist is sore but I know I can still write, chop veg, clean two bathrooms and drag the hoover about so the MTX must be working.

But I still feel low and exhausted and even a walk down into my hometown this morning to buy a few additional prezzies for the birthday boy and some friend's silver wedding party tomorrow (yippee this gets me out of baking a birthday cake!) - followed by a quick circumnavigation of friend's exhibition I'm to review has totally wiped the floor with me. Came home downed a fish cake OH had cooked and went to bed. Am just surfacing feeling more ready to make the prawn korma that I have planned and lay the table, dress up and be welcoming.

Some of the comments made re the blog about RAers being kind to each other and not judging each other made me feel so proud to be a member of this forum. Although many of course are so much worse off than me - I still feel welcome and not judged somehow? It's so nice to have a place to come where I can say to myself "I have RA and look it's taking me somewhere good where people are kind and supportive and sometimes very funny too" - like a really good club room I can sneak off to in between daily chores etc.

Thought for the day over.. must get some more cooking done. TTx

Ps photo was taken about 10 days ago on a bonnie day here when I kept receiving photos from my two sisters of Surrey and North London (where they both live) under snow so I felt I had to send one back with a bit of a gloat! Now the opposite applies only ours is not picturesque it's big white flakes blowing sideways in gale force winds - yium!

12 Replies

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  • Beautiful place in your photo. I just managed a short walk along the beach with Hubby!!! Lovely day here in the north east and I should have taken my camera!!

  • Yes you should! - if you're anything like me Allanah you look at the good weather days as the ones to remember - it's blinkin' foul here now! TTx

  • hiTilda

    As i mentioed in my blog still waiting to have my ultra sound results,something very very painful has been causing me awul discomfort the ulnar is giving me gip in my thigh seems swlollen leading up to the dreaded hip cant get comfortable sitting is worse alot better when im standing , first time for this problem its terrible, taking the Naproxen along with 2 co=codamol not much relef at all.any advice would be most welcome,also using wheat pillow. Ooooch

    thankyou Pat

    PS what a beautiful place to live its wonderful .

  • Hi Pat - sorry you are asking the wrong person about pain relief here - I"m hopeless but I wonder if the pain in your hip might be osteoarthritis if it's not responding to the Naproxen? I may be wrong about this but I believe hip problems are less common in RA than in OA.

    Did you mean the ulnar joint in your wrist is giving you jip? Not sure what to recommend but some people swear by Diclofenac (i can't take that) and others by Tramadol. I have all of them in my medicine cabinet but you should also be taking stomach protector such as Omazeprole if you are taking these medicines. If you post on the main site I'm sure others will be able to tell you more. Once you have had results of your ultrasound scan they will probably be able to target your pain better and perhaps give you steroids? Good luck TTx

  • Tilda, I love the photo,it looks lovely. I feel for you. I don't know whether i have mild ra or not,but i do know i like you suffer from exhausted. Some nights i sleep and some nights i don't. There's no logic to this disease is there.

    My hands are bad at the moment,because i am off the mtx,have been for 4 weeks due to chest infection.The antibiotics are the 4th course since xmas. I don't know yet when i am able to go back on them.Will speak to rheumy tomorrow and see what she has to say.

    Hope your party/meal went well.

    Take care, sylvi. xx

  • Hope your dinner party was a success and that you didn't wear yourself out. We went to anselm kiefer exhibition in London which was lovely and gave me sustenance for weekend with my father who isn't well - horrid cough and at nearly 101 thats not to be trifles with. Back home tomorrow.

    Thinking londons noteasy for people with ra

  • Thanks I think it went well - hard work - but OH is a bit hungover - currently yabbering to his twin sis on the phone (planning their hundredth!). I managed to only drink one small glass of bubbly because MTX test tomorrow and I want to be allowed to go up a dose on Tuesday. I don't seem to have paid too much of a price for all the work yesterday because we had a lie in this morning and it's sunny on snow now so looking forward to taking the dog for a walk and going to some friends who are having a pancake party this afternoon for their silver wedding do. I'm going to go down and work off some of the pavlova (2 helpings) and the chocolate and the large helpings of curry now. Wrists are playing up again a bit but nothing too bad

    Funny because I thought about Kiefer briefly yesterday Cathie - looking at this friend's exhibition in the morning and there was a drawing that was very like a Kiefer landscape.Poor you with your dad but that's some age to reach - almost 30 years longer than my parents. No London is really not RA friendly is it - all those stairs on the tube? I had to drag a small suitcase round it in November when I went down for a funeral and it was torture for my poor hands and wrists. Everything seemed hard work physically and mentally - but it was mainly the endless stairs on public transport that came as a shock. I'm a Londoner who had never seen London from through the eyes of someone with a disability until then. TTx

  • When we go to london we have to have taxis as you can't scooters on the underground. The cabs drivers are usually ok and they are easier to around london.

    sylvi.xx

  • Hi Tilda

    Glad your OH's birthday party went well and give yourself a pat on the back for managing to see it through (plus all the other things you managed yesterday).

    Reading your comment about dragging a suitcase around London and the torture it caused on your hands and wrists reminded me that a couple of years ago I bought a new suitcase which has 4 wheels instead of 2 which I found a great help. If you haven't tried this type of suitcase have a look in the shops and see what you think. I found the suitcase a doddle on flat ground (even over a carpet) and then it could be dragged on 2 wheels as usual if necessary.

    Have a nice time at the anniversary party,

    Judi xxxx

  • Mine was fine on the flat ground too Judi because it had wheels (only 2 though) but it was getting it up and down the many steps on tubes and buses and on and of kerbs etc that was so tricky. I wore splints but I was with both my sisters who are deaf and rely on sign language to communicate quite a lot with finger spelling and sign language which are both really hard with stiff, painful fingers and wrists I can tell you! TTx

  • Thankyou Tillda

    sorry to trouble you with my probs never had pain like it and i should have said Femur not Ulna i had been reading your blog and it must have stuck in my mind LoL, I bet you thought this women really has probs.

    PAT

  • Well I did wonder about ulnars in hips but really who am I to question this? - I only heard of the ulnar joint myself about a month ago! Good luck with femur and let us know how it goes when results of ultrasound come back. TTx

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