Not normally like me but Hello all

Domcben87
Domcben87 Member Posts: 3
edited 20. Feb 2019, 06:18 in Say Hello
Hey everyone, my name is Dom, I’m 31 and have been living with psoriatic spondylitis, which is inflammation in the blood and arthritis in my spine, I don’t normally like to talk about it with anyone as the entire world has made me feel ashamed of what I have, always hear people saying that it’s not a real problem and it’s common so people shouldn’t make a deal over it. I’ve spent a lot of time thinking I couldn’t ask for help and talk to people about it. Recently I’ve gone through a lot of tough times both physically and emotionally, recently being my own doctor telling me I should ignore it and go out and do more.

The world has a way of making us feel like we don’t matter, as if we should be hidden under the rug, but I’m fed up of hiding my aches and pains, I’m sick of not being able to talk about it and ask for help. Why shouldn’t our disability matter? None of us asked for it and I’m pretty certain we could do without the sleepless nights, without the constant pain, without us pretending that we don’t want something when in actual fact we are unable to do it because our own body is fighting against us. I want to join in conversation and share my feelings and experiences with other people who feel that the world has given up on them. We do matter and hopefully arthritis will be taken seriously in a near future for everyone.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hello Domcben87 and welcome to the Versus Arthritis forums from the moderation team.

    We have a great community here, with lots of experience of arthritis who I know will make you very welcome and help in any way they can. I am so sorry to hear what a tough time you are having feeling believed and having your condition taken seriously.

    There are quite a few members on here who have Psoriatic arthritis like you, although many of your symptoms will be very similar to those of other types, so you will get lots of tips and support.

    Psoriatic arthritis or in your case Psoriatic spondylitis, (or Psoriatic spondyloarthritis), is not a common condition as such, which I’m sure you already know. Here is some information you might want to share with people who don’t understand:

    https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/


    https://www.versusarthritis.org/about-arthritis/conditions/ankylosing-spondylitis/

    Versus Arthritis very much wants the voice of people with Arthritis to be heard so you have absolutely come to the right place to share your experience.

    Best wishes

    Ellen.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us. I wonder if those around you are getting confused between your kind of arthritis and osteoarthritis? The latter is very common indeed and people tend to associate the word with either OA or RA because they are unaware that there are other kinds. I began my first arthritis, psoriatic, when I was 37 (this was back in 1997) and then osteoarthritis was diagnosed in 2011. I was born with auto-immune issues so the arrival of the PsA was no surprise, unlike that of the osteo: I thought that one had either one kind or the other, now I know that having both is the luxury upgrade. I am now nearly 60 and take a low dose of an anti-depressant on a daily basis to help me cope better with the pain. I began with one joint, now it's around forty so there's a lot that hurts.

    When I was a small child I was severely bullied thanks to having severe asthma and eczema and that left me disdainful of the healthy: they lack any challenge in their lives and that, as far as I am concerned, makes them weak. They are also not afraid to give me stupid advice, probably because osteoarthritis, being as common as it is, it lacks any menace or threat. I have yet to hear someone with cancer being advised to drink cider vinegar or wear copper bangles but for the likes of me stupid advice is imparted with simpering smiles as they tell me their granny swears by glucosamine - then closer questioning often reveals that granny merely thinks she has arthritis, she doesn't like to bother the doctor . . . .

    I've never felt the world has given up on me even though I was dealt an appalling hand at birth. So what? I am nothing special and learned when I was a child to make the best of what I have when I have it. The meds were not invented when I was younger, undoubtedly life with them is easier but one has had to have known life without to appreciate that. I try to teach people about my arthritis but only if they are genuinely interested: health bore I am not. People genuinely do not know about it, there is a difference between ignorance and stupidity, the former can be rectified.

    It is good that VA is being able now to raise more awareness but there is still room for more, it is no to us, those who have it, not to hide away but to be out there, telling people what they need to know. I have always been more than my disease and always will be. DD
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hi Dom. You're clearly finding life very tough right now and I'm sorry to read that. On here, we all have different forms of arthritis (I have rheumatoid – RA – and osteo – OA) but we all share the difficulties and frustrations which are common to all.

    Please feel free to share your own feelings and experiences as much as you wish although I don't think many of us feel that 'the world has given up on' us. That must be truly dreadful. Perhaps, being female, I'm in a privileged position. Perhaps women are more tolerant of illness and disability than men. Could you explain a bit more about the things that make you feel this way?

    Admittedly, I've been unable to work for most of my adult life but I've been able to do voluntary work and generally make myself useful. I think that has helped me to keep a positive outlook on life. Plus, I've had good family and friends. How about you?

    Most of us on here find that one of the best solutions to our constant pain is distraction. For me, top of the list is cricket but I also like baseball, rugby, (both codes but preferably League), reading and doing puzzles (crosswords, sudoku etc) What are your hobbies?.

    Of course, for us, housework takes longer and is more draining so that takes up far too much of my life. In the evenings, after eating, I tend to just slump in front of the TV. I take a couple of co-codamol about half an hour before going to bed and I usually find I can get off to sleep. I have invested in a good mattress (¾ sprung and ¼ memory foam) and also a shaped memory foam pillow. These make all the difference to the quality of my sleep and therefore to the quality of the next day.

    We all need a good relationship with our GP. If yours isn't, I suggest you either see someone else in the practice or change GPs. It's very easily done.

    If you think it would be useful, why not give our lovely Helpline people a call? They are very understanding and will give you all the time you need.
  • Domcben87
    Domcben87 Member Posts: 3
    edited 30. Nov -1, 00:00
    Thank you for the welcome everyone.

    I’ve always had skin issues as a child myself, was constantly bullied for having flakey skin when I was in school, lead to a lot of self confidence issues (I would wear a jumper in the summer to hide my skin). But I did learn to grow a tough skin to minor insults and comments like that, when I was diagnosed with psoriatic arthritis when I was 25 it didn’t affect my way of life at all, I was on pain killers and it wasn’t so bad, I thought it would be ok to live with, around my 29th birthday I found myself having a lot of issues in my back, just assumed I pulled a muscle or something to that extent, after it persisted for months I asked about it and was told I had inflammation of the spine, and was officially diagnosed with spondylitis, I’ve tried pain killers and methotrexate and although they helped my joints it did nothing for my back, I’ve recently started biological treatment for my back and I’m hoping that will help. One of the main issues I have is lack of sleep because of it, I wake up every hour or two in pain from where i have turned onto my back during sleep.

    My hobbies include reading, listening to music, playing games and watching television, I use to be a much more social person as I use to spend most my free times out with friends, but bit by bit I found myself just wanting to stay home.

    The reason I feel alone more than likely is my own personal issues, a lot of people around where I live shrug it off and would quickly change the subject to not give time to talk about it or ask questions.

    I’m still learning what is caused by the arthritis, for example I’ve recently learned the fact I’m always tired in the morning and the fact I find myself falling asleep at random times during the day is because of it (my nurse for new medicine explained).

    I’ve only recently found VA on an advert in the cinema and I’m really happy to find a community who knows and is willing to offer advice to get life back to a normal pace
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hello again, Dom, and thanks for telling us so much about yourself. I guess that can't have been easy given that life has taught you to be a bit mistrustful of people at first. i hope you'll feel you're among friends here.

    I think most of s have found that many people are not comfortable around long-term diseases and disability. Frankly, I think, in some ways, arthritis is useful there as it sifts out the shallow people and / or those who think our arthritis is who we are. But the others......well, I've made some really good friendships with people who know it's only a part of us and who relate also to the other bits.

    It's very easy, though, to 'shrink' from potentially difficult situations and 'stay safe'. But 'safe' can also be lonely. i remember going through I phase where I would do one really difficult thing per day just to ensure I could. Such as a phone call or a letter or a visit. Hard to do but I did feel really good about myself afterwards.

    The disease, when flaring, can definitely make us feel exhausted especially in the morning but, as I discovered recently, so can some of the strong painkillers. Actually, I wasn't too bad in the mornings but the day, after lunch, was a bit of a write-off. Thank God I'm off them now!

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