Life with Arthritis

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Mbrooks
Mbrooks Member Posts: 3
edited 30. Dec 2015, 08:35 in Living with Arthritis archive
Hi

My life has been turned upside down by this disease

My medication
2 x 40mg humira injections fortnightly
4 x 200mg pregablin daily

I'm 29 and it was diagnosed 12 years ago, I try my best to not let the pain ruin my life but sometimes like today it gets me and feel really down,

The last 12 months has been a rollercoaster lost my job of 7 years as an IT Manager because of the amount of time I had off and have given up finding a new one.

Relationships with women don't last when they see me on bad days they can't put up with me!

Friends don't seem to fully understand, and I feel like I've hit rock bottom.

I've had stainsby procedure on my left toes, I've had my left ankle fused and both thumbs fused, and also been told I have a slipped disc in my back but they won't operate until I've lost 5 stone. That's the difficult one when I can hardly do any exercise!!

I would like if possible to know if there are any support groups in the Manchester area where I can meet people of similar age with similar problems that understand what I'm going through.

I'm currently living on my own in my own house but finding it really challenging.

I get enhanced pip for living and motability after being moved over from DLA which was a horrible experience, and even though having benefits to help is good, I would give them up at the drop of a hat if someone said I could make you normal again!!

Sorry if I've been waffling on but just need to get this off my mind,

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi
    Welcome to the forum. Hope you will find help, support, advice and information here,

    I am one of the moderation team and we all have one or two of the 'arthritis hangers-on' or look after family with the same.

    If you have any problems with the technicallities of the forum please send us a private message,

    CK Moderator.
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    Hello, and welcome to the club no-one wants to be in! You are young to be facing all this and I'm not surprised you are feeling down. It's a bit quiet at the moment with it being holiday time, but I hope as you read around you'll find others with similar problems, and also examples of the occasionally rather 'alternative' version of humour that arthritis can provoke. Several folks have faced the weight dilemma and if you look on ChitChat you'll see how the most recent one - GraceB -is getting on.
    No need to apologise for waffling, as it's not waffle, but setting out what's going on with you. I hope you've found it helpful to offload, as you say friends and family don't understand, but on here we are all too familiar with the delights of pain etc
    Regarding support groups in the Manchester area, have you looked on the Arthritis Care site to see what might be available?
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
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    Hello and welcome from me too,I'm on humira too have been for just over 3 years ,I consider myself one of the lucky ones as I wasn't diagnosed till I was in my early 60s but before that I had lupus for many years,Im just on 40mg fortnightly and I thank the lord that its working for me AT THE MOMENT.Waffling is what a lot of us do sometimes its the only way to get through it all.
    Please have a look round chit chat if only for a laugh even if its at yourself which is another way we get through all this dross.Hope to see you around. Mig
  • GraceB
    GraceB Member Posts: 1,595
    edited 30. Nov -1, 00:00
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    Hi,
    welcome to the Forum. I've got OA (osteo arthritis) so can't help re the drugs for RA. However, I'm the one currently getting fantastic support from the wonderful people on here with my weight loss.

    I've joined a slimming club (SW - not allowed to put the full details here due to Forum rules). I'm dropping my weight 1-2 lbs a week and have been plodding on like this since the start of September. When I weighed in last week I'd lost a total of 1 stone and 11 lbs. I have a long way to go yet as from start to finish I need to lose at least 4 stone and don't anticipate doing this in under a year.

    Unless you have an arthritis type disease you cannot understand what it's like to live with this. Please Google "The Spoon Theory" and "There's a Gorilla in the House". Both of these may well resonate with you and if you draw these to the attention of people around you, they may then get a small glimmer of what life is like for you.

    With regards to your pain, if you are under the care of a Consultant talk to that person, if you can't get hold of them, then see your GP to see if s/he can help.

    In the meantime, keep looking on the Forum, keep posting. There's a wonderful bunch of people on here and when we can, we all try to have a laugh and see the positive side of life.

    Take care,
    GraceB
    Turn a negative into a positive!
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
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    Hi Welcome to the forum, I was in my late twenties early thirties when I was diagnosed with my Arthritis and I know how you feel with the friends and family not understanding. Also I was fired from my job because of the amount of time off. I was fired by letter! Nice hey!!
    This site has been a massive help to me and I don't know where I would be now without the site I was rock bottom when I found it, and I started a book club up which is doing well and anyone is welcome to join.
    It maybe worth calling the helpline to see if they can help with finding a local group for you. Again welcome to the Arthritis Care family. :candycane:
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
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    Hello and welcome - though I can`t add much to what has already been said. Your life, as you say, has been turned upside down, and it certainly takes time to come to terms with your diagnosis.

    From personal experience, you will also find out who your real friends are, as opposed to the `fair-weather` ones.

    I currently take Humira once every fortnight, and hydroxychloroquine.

    I can`t help with support groups in your area as I live in Durham. If you put a query into Google you should come up with something.
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