I am feeling horribly frustrated today. I am not even sure why, I just have that horrible restless feeling where you need to do something but you can’t think of what to do. The thing is, I am in pain and extremely tired so I can’t even do anything anyway. I guess I am just bored, waiting for something to happen. The snow has fallen in its bucket loads over the past two days leaving my car stuck in a white tomb. It requires far too much effort to dig it out and the roads are too dangerous to drive on anyway. The temperature is freezing so it means walking is out of the question too.
So far, I have had a pretty good weekend. I shared a night in with the boy, ate some good food, did some Christmas shopping in the snow (all very festive) and now I have come to a grinding halt. I guess I am not used to doing too much so when I get to do things I get myself on a roll and want to do as much as possible. What is there to do really when you have exhausted all of your tasks?
I have been concentrating on looking forward to the Christmas festivities; I have even devised a quiz for the family on Christmas Day to keep me entertained. I suppose if you are a working person you don’t have much free time to squeeze everything into. However, when you can’t work (like me), all your time is free and you have to space things out so you don’t get horribly bored. I simply cannot wait until I am able to return to some form of work. Keeping busy keeps my mind off things. It makes me feel valued and satisfied. I think I have pestered charities enough for volunteer work this week.
The good news to report is that I have had some very positive feedback from a publisher regarding the book I have written, so if they do decide to publish it (fingers and toes awkwardly crossed) I will have something else to do with all this free time. I do enjoy the odd ‘sitting around’ hour or two but after nearly a year and a half, I have come to the end of my tether. I think I will go find some loose buttons to sew on or some family and friends to annoy with my moaning. Oh and by the way (in case you had forgotten) it’s Christmas in six days! (Id very much like to use my free time to open presents...)
Dear Rheuma Girl,
ReplyDeleteThank you for your positive and upbeat spirit. You are a bright light in the land of bloggers. As someone diagnosed at age 44, my heart goes out to you with your young onset at only 22. I truly hope you find the right combination of medications, (etc!) to put you in remission, or at least give you a better quality of life. Good luck on your book!!! You're a fantastic writer with interesting style and you have a powerful message to share. Have a blessed and meaning-filled Christmas! Hope you find LOTS to do and do it in comfort!
:) Linda Robinson
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ReplyDeleteThank you for your comments. Alice, i appreciate you do not wish to use medication to control your disease however as im sure you can appreciate alot of my readers suffer with severe forms of arthritis which cannot be kept under control without it (including myself). Using medication does not mean under any circumstances that you will die young and im not sure where you have read this, i am sure doctors would not recommend taking tablets if this was the case and i would rather live a life without much suffering and protect my disease from being constantly active than be in constant pain and just accept it as i am sure my readers would agree. I think it is completely up to the indiviual if they choose other methods but in my case, drugs are the only option along with a healthy lifestyle. I think we have enough to worry about without being scared into thinking we cannot chose to treat our conditions with medication. However if this method works for you then great but for the more severe cases people may not have so much of a negative view on medication if it helps. At the end of the day life is too short anyway to live a life of suffering and the amount of scaremongering out there is frightening enough, my 'deadly cocktail' of drugs keeps me healthy and able to move and thats all i ask for right now
ReplyDeleteWell said Kerrie. I have been told by many well intentioned people that a diet or exercise or even mind over matter will help me control my pain etc. Unfortunately this is simply not true particularly if you have severe RA. As for cross stitch my poor hands wouldn't be able to hold the needles! I can barely hold a cup!
ReplyDeleteI agree with you, work keeps the mind busy and even though there are plenty of days I moan about getting up at 6am every week day once I'm there I feel much better. I was feeling grumpy because it's Sunday night but your post has reminded me to be thankful that I have my job and am able to still do it. I sincerely hope you can get back to some sort of employment in the new year. Merry Christmas!
ReplyDeleteHello Kerrie
ReplyDeleteYes can completely agree with there!
I have Psoriatic Arthritis (similar to RA) and have been on a similar, yearlong roller coaster ride of pain.
I too take a daily "deadly cocktail" of drugs to try and control this and lead a semi normal live (have not quite got there yet!) and believe me Alice, if I had any choice in this, would not be shoving down these drugs daily!
When you have very severe arthritis, you have to do what you can to try and get your health and life back on track and this involves taking medication.
There is no evidence to say that for all of us currently taking these drugs, we are going to die young - I think that is a very uneducated and dangerous comment to make for someone who has a very serious disease like Kerrie, myself and many others ... where the luxury of choice of treatment is not really an option.
My aunt, who is 60 and was diagnosed at 37 with RA, is living proof of this - yes she still has to take drugs but she has adapted and makes the best of the good days and loves to travel when she can.
You mention Alice that you have changed your life in 3 years and control the pain 80% of the time - it would be more useful for us to hear how you did this?
Hi Kerrie I have just read your blog from start to finish and feel like you were taking the words out of my own mind. I have been suffering mildy for over a year but the last couple of months have hit me like a sledge hammer, especially in my old lady hands which are now starting to twist up and my bloodly left knee is the bane of my life. I know too well how hard it is to get out of bed somedays, and other are fine until all of a sudden you could just lie down in the street to sleep. My doctors have had me see a round of surgions hoping my condition was carpal tunnel, but of course it is RA. I have my first rhumotologist appointment on new years eve so am hoping this will be a good start to the new year. I hope they can do somthing soon before it gets any worse. Today I picked up a copy of Company, a mag I never buy, only to read a letter someone had wrote in about your article, thank you for being so brave to write this blog it is comforting in a strange way to know you are not alone in this, although awful, so awful to read someone is suffering too and your case is much worse than mine. I am only 29.
ReplyDeleteI also write a blog, on fashion, it is my armour in a way, but drop me a line if you want any more publicity for your Fashion show I would be happy to post about it if that would help!
I hope you have a wonderful Christmas,
Pearl
p.s Codine Coma - so, so true x
Like you I became severely ill in April of 2010, I had been feeling generaly unwell for a long time, but woke one morning unable to get out of bed as the pain was so extreme. Rounds of hospital appointments followed before I got the diagnosis of RA with the addition of Osteoarthritis as well. I beleive that like you, my condition was as a reaction to repeated viral infections, with the addition of stress (as I type this I have yet another infection)! Both my parents had died the previous year, my mother having been housebound through RA for many years. Unlike you I do not have the blessing of family around, so have had to rely on good friends to help me through. Shortly before RA was confirmed my marriage of over 20 years ended and it has been my 2 dependant children that has forced me on during my darkest hours, as I am all that they have. I'm glad 2010 is behind me, and hope that the cocktail of drugs I cannot function without, will in time, get me well enough to allow me to find employment. If people make misguided comments about RA sufferers being on benefits, then I can only say that they are most fortunate in never ever experiencing the pain and utter dispair that this debilitating disease brings. I wish you well on your journey and sincerely hope that 2011 is a better year for us both !
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