Welcome to my online diary about the struggles of dealing with rheumatoid arthritis. I write about about the highs and lows of day to day life in an honest way as possible. I hope to share my experiences with those in a similar position and help them to realise they are not alone. It is a unique postion to be in, to have a condition which most people associate with older people when you are just starting out in life. But together, as we discuss our experiences, we can feel less isolated and alone.

About Me

My Photo
Leamington Spa, Uk, United Kingdom
I am 32 years old woman with Rheumatoid Arthritis. The disease came on literally overnight five years ago when I was 27 years old. I was diagnosed with many different illnesses before it was labelled R.A. I am taking methotrexate, humira injections, steroids and painkillers. It's been the hardest 4 years of my life though things seem to have turned a corner and I have met a wonderfully supportive partner. For a long time I have tried to fight it and had many different therapies to treat it. I lost faith in the medical world after several misdiagnoses and inadequate treatment. I then chose to follow an alternative route and have tried reiki, spiritual healing, alexander technique, kinesiology and EFT as I believe there is an emotional and psychological element that plays a part in disease. All treatments have helped the RA though not cured it. I am currently on the Margaret Hills Clinic programme for treating arthritis and this has proved successful so far. I am trying to come to terms with the illness and deal with it rather than fight it. Follow my day to day trials and tribulations coping with the disease and how it affects my life.

Friday, 29 October 2010

Depression

The past few days have been horrible!!! My joints have been soooo bad.  I am so desperate to come off the steroids but with the weather is making the joints worse.  I have the worst headaches too and I am sure my body is craving some form of exercise.  Yesterday nothing helped as it was that time of the month.  I was feeling very irritable too.  My thoughts are very negative when I am in pain.  I just lie there feeling very sorry for myself and blame everything I can for getting ill, including myself.  How can I be lying in bed with nothing to  do all day long.  My confidence has all but gone.  If you would have told me 5 years ago I would be housebound I would have laughed.  I used to feel so sorry for my elderly nan as she was housebound towards the end of her life and here I am doing the same.  I am very sociable by nature and I spend all day alone.  This is like a living hell.  I wouldn't wish it on my worst enemy.  It's so frustrating being ill and chronically ill not knowing the cause or cure. It leaves you in limbo wondering what on earth could have caused this illness. 



Yesterday I went to the GP and ask for help.  My financial situation is so complicated as I bought a large house before I got ill and now struggle to keep it.  I have managed to but have jumped through many hoops and loopholes to eventually get the support I needed.  I am in a catch 22 financially because every way I there is a dead end.  I have been to the CAB, phoned every debt line going.  the rules states you can't earn over such and such if you are having financial help, you can't sell your house because it would be more debt, you can't rent out because thats against the rules, the bureacracy bollocks just goes on and on.  The government do not take into account people that get ill during their twenties and they leave you in a poverty trap.  I want to work a few hours but if I do other money will get taken away so you think what's the point.  The government needs to wake up and take into account peoples individual circumstances and tailor help accordingly.  All the financial pressures are putting a massive strain on my health.  Sometimes I feel really bitter and angry that I don't have more support and other times I end up blaming myself.  I have even gone to relatives to ask for help but nothing.


Life is so hard at the moment, I just wonder if things will ever get any easier. 
I found out that I may be able to reduce my mortgage interest rate so asked  the gp for a letter of confirmation.  The answer was no because of this reason and that reason and it was my rheumatologist's job but I am afraid she won't help either and so far I haven't seen a great deal of her.  She has to agree to send a letter saying in a years time I will be fit to return to work.  Can't see it happening myself but I need this so badly to get back on my feet.  A year of less mortgage to pay so I can sort out my finances.  I am just scared of making the worng move.  If I sell this house I am afraid I will never be able to get another house like this but it's crippling me financially.  I am also not happy about going back to rent when I am nearly 32 and with not knowing if the house market prices with rise or fall, it's very hard to know what decision to make. 


I could rent the whole house out but I will lose money from the government as even though they rental would cover the mortgage only, in their eyes it's still considered as income. I feel very desperate at times,  I don't want to be in this house because of all the problems here but I am scared to leave.  I am definitely stuck in a rut.  The house is too big to maintain and the stairs are a nightmare too, I could do with living in a flat.  I wonder what happened to all the friends I have/had, why does no-one call anymore?  Was it my fault, did they get sick of me and my problems or are they just preoccupied with their own lives cause I could sure do with some more moral support right now.
My head is a big fuzz and my emotions are all over the place.  I need to go to bed and get some sleep.  I had to take an extra painkiller last night.



My last hope is my appointment at the Margaret Hills clinic in Kenilworth on Tuesday.  I am hoping and praying that I have the strength to stick to that diet, it's my last chance to have a life again.



I have been back and forth to the doctors asking medication for the depression but haven't got any and I don't want to take them but my moods are so up and down and the moment.  My thoughts are quite dark and sad too.  Then othertimes I am fine.  But they didn't give me any medication so I guess it's not mean to be now and I will just have to fight it out.

4 comments:

  1. Hi - I know all of these feelings, and have slept downstairs many a night in my crumbly 1300s farmhouse rather than struggle with the stairs! In my early 30s, I remember thinking that if I was a cat, it would be kinder to have me put down - the intense pain, the inflammation, the depression, the worry and the struggle were that bad. PLEASE NOW READ ON!!! I am now 44, I work full-time, win awards for my work and sleep upstairs again. My Rheumatoid Arthritis is in my life, but barely. I'm off all drugs. I still feel tired, but NOTHING like the throbbing, crippling, flu-like misery of my 30s, and perhaps I only feel tired because I have a demanding job and a big old house to clean. I want you to know that this happens,and that you are not necessarily on a downward spiral. Diet was key for me, so good luck with that. I did an elimination diet, and wheat, etc., caused an extraordinary lethargy, dip in mood, swelling, urticaria, vertigo, etc. If I follow a strict gluten-free diet, I'm fine. If I also remember (haha) to drink plenty of water, I feel alive again. So simple, but so difficult to keep up with! You WILL be well again :)

    ReplyDelete
  2. I found your blog through RA guy - and parts of it resonate with me. I am in my mid-30s, I am on MTX, Humira, Diclofinac and Prednisone (no painkillers, although I feel at times, they would be useful). I hope you find some relief through your drugs and support through your writing. I'm looking forward to reading more.

    ReplyDelete
  3. Hi Jenpa,

    I stumbled across your blog via facebook when i was searching Ra. Just felt i wanted to connect and say Hi.

    I'm 38 and have been Ra for the last 12 years or so. Been on the usual drugs, methotrexate and sulphasalazine and now going back on Humira. I was on te original trial some 8 years or so ago and then, it really did me some good. I just hope i get some relief this time because 2010, jointwise, has been rubbish.

    I also have type 1 diabetes thanks in part to long term steroid use affecting my pancreas.

    Funny but reading your blog made me feel less alone and singular in my young suffering.

    anyway, you also inspired me to blog my going back onto Humira so if you want to compare notes, mine is http://rheumatoidarthritisonhumira.blogspot.com/

    Look after yourself and feel free to chat/ mail or whatever if you need someone to talk to.

    Best wishes,

    Andy

    ReplyDelete
  4. Thanks for your replies. Anonymous, your story is incredible and inspiring that you found a way out through diet. I don't think the medical profession pay enough attention to this at all. I am inspiried.

    Thanks Megan for your words too and I hope you gain something from reading.

    Andy, I am looking forward to reading to reading your blog too and yes you are not alone, would be good to chat sometime.

    ReplyDelete

My Rheumatoid Arthritis Diary