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24 yr old single mum, stuggling to accept recent diagnosis

toriateacaketoriateacake Posts: 11
edited 19. Nov 2012, 12:38 in Young people's community
I am 24, i have a 3 year old boy and i live on my own. Have been suffering with the symptoms since august 2010 and was diagnosed in april this year, the tuesday after the royal wedding actually. I thought i was coping quite well with my diagnosis until my most recent visit to my rheumatologist, my arthitis is just getting worse, quicker than i thought it would. My friend has made my come on this because im trying to bury my head in the sand and the simplest things like drying my hair is painful, this makes me upset. :sad:

Comments

  • suzygirlsuzygirl Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi and welcome to the site. You have been directed to a good place to get info and support. Lots of us try denial, myself included!!! Have you spoke to physio and OT to see what help you may be entitled to?? They show you easy ways to do things to save energy and minimise pain. I have given up trying to dry my hair, I leave it to dry naturally as much as I can. A difficult change to accept, its the small things that get you like missing your favourite pretty shoes.

    Talk to us, we do understand, and will try to help you along the way. People here have been so good to me, along the way with the ups and downs. We try to help each other.

    How are you doing on the meds? Do you have adequate pain control? Do you get enough sleep and rest?? All are important. It must be difficult with a toddler on your own. Take as many offers of help as you can get. Does he go to a play group? He must start nursery soon?

    Take care x
  • toriateacaketoriateacake Posts: 11
    edited 30. Nov -1, 00:00
    i just feel so sad all the time but i dont want people to read this and just think all that i do is moan. i just dont even know where to beguin with accepting this is my life now. ive always been fiercely independant, i dont like relying on other people. I know im hurting the people around me by being like this but i feel like all people are doing is pushing me to accept it, i dont even know what to do.

    This is all so new to me, i only get to see my rheumatologist ever 4 months and my doctors pretty clue less. Steroid injections used to be good but i had one on halloween and it had warn off in about a week. i'm on salazapyrin and i started methorixate a week ago. i take one naproxen in the morning but im in pain by the night. I do sleep quite well luckily. My son is a very good boy, he is used to me being ill now. i go through times where i feel so guilty about the fact i have no energy to do things that other parents do.

    i just feel so lost x
  • frogmortonfrogmorton Posts: 25,580 ✭✭✭
    edited 30. Nov -1, 00:00
    Hi toriateacake

    l am not young :oops: , but saw you user name and had to come and see who was imaginative to come up with this name!!

    First of all there are loads of us on here who are Mums.....l am pretty well ok now as mine are 16,16 and13 all girls and helpful too, but l had back surgery when l was single Mum to two of them (one is step!) aged 5 and 8. So l share your sadness at being a less 'able' Mum.

    There are loads of Mums on here with different forms of arthritis, some on their own some with good partners and some with less good partners. The fact that you are thinking about your boy and worrying about him means you are a very good Mum.

    If you nip onto the LWA forum you will see stacks of people on sulfa and mtx and will get loads of support. Most of us see our rheumatologists about every 6 months once our meds are sorted out, but you are not sorted yet. Do you have a rheumatology nurse you can talk to who may be able to support you???

    Oh and finally....and maybe most importantly....at home you may well be the only person you know who has arthritis - on here we all do :smile: You are NOT alone and we all have a good moan from time to time....please keep posting trust me it has helped me so much coming on here.

    Once your meds are sorted you will feel far far better and much better able to be the independant woman and Mum you are. Come on here and share your worries with us lot - we can take it :smile: Our poor families (like us) probably want it all to go away again!

    Love and HUGE hugs

    Toni xx
    Love

    Toni xxx
  • loopylou94loopylou94 Posts: 24
    edited 30. Nov -1, 00:00
    Hey,
    Im 17 i was diagnosed with PA last Feb. It took me a while to get my head around my diagnosis and i started by pretending it hadnt happened but that definatley didnt work. So i came on hear and it really helped me ive found some great people who really understand what your going through which was great all though my friends at school where sympathetic they dont really undrestand. Its not thier fault they really tried but its not the same as talking to someone who really gets what its like to live with it nday in day out.

    In regards to finding the simplist task painful i am hugeley sympathetic because i also struggled with the simplist tasks like washing my hair and making my own breakfast that used to really frustrate me. If you want a chat anytime you can PM me whatever :)

    Hope you are well and things are better!!!!
    Sending you lots of hugs and love!!!!!
    Laura
    xxx
    loopy lou :)
  • fernie16fernie16 Posts: 8
    edited 30. Nov -1, 00:00
    I know how difficult it can be finding out you have arthritis (we all do) and some times it helps to talk to family and friends and sometimes not so much when i found this site it helped a lot knowing i wasn't alone and reading advice but i don't like sharing my feelings with lots of people so i decided to have so counselling and i found that it helped so much and that it helped lift a great weight off of me and after i had it it allowed me to concentrate on getting better.
    Hope I helped
    Fern x
    Better to loose a few battles in the struggle, than to give up our dreams without putting up a fight.
  • toriateacaketoriateacake Posts: 11
    edited 30. Nov -1, 00:00
    heey, i know i havent been on here for a while. thank you for all being so nice. i have started councilling and ive become stable on my methotrexate. it seems to make a massive difference to my mood so thats good :) i have alos moved into a bungalow that is disable adapted so i dont have to stand to have a shower yay. i didnt really realise also how much i was struggling with stairs until ive started living without them. now though i have been to the doctor and she has informed me that all that they can offer from here is steroids, which i do not want at all. its now come to a point where i need to start managing my lifestyle a bit better. so thanks for being nice x
  • resusjanresusjan Posts: 290
    edited 30. Nov -1, 00:00
    Hi there,

    Had to reply to this as I notice you are in Pembrokeshire - me too!

    Have you been given the numbers for the rheumatology nurse specialist at Withybush - she's great. Also the Occupational Therapy department and Podiatry clinics at withybush are also good - your GP or one of the rheumatology consultants can refer you there.

    I'm not as young as you (42) but I also have Rheumatoid Arthritis, diagnosed last year so have also had trouble accepting it all. Feel free to PM me if you need to talk or need names or numbers of the specialist teams at Withybush.

    Jan
  • Katielawson1000Katielawson1000 Posts: 11
    edited 30. Nov -1, 00:00
    Hi I am a 21 yr old female which all this started from having a terrible car crash early in 2006 when i was 15!
    My lower back pain got worse over the years and my doc and the hospital both said it was pulled muscles and bruising at the time of the crash and then further down the line whip lash that wud heal in time! I new in my heart from day one the pain and difficulty I was finding wasn't normal, we all know are own bodies! What feels right and what doesn't! I was constantly to and from the docs with different pain killers and inflammitories then they referred me to physio and eventually they sent me to a rheumatologist specialist were only roughly 2-3 years ago I was diagnosed with sacroilitis, inflammation of the lower back (sacroiliac joint) which is connected to My lower spine and pelvis.. As you people who also have this can agree its very painful and can really change and affect you as a person and ur lifestyle. I struggled hard with post traumatic stress disorder even 4-5yrs after the crash as I found it near enough impossible to accept and was convinced my life was ruined and would never be the same again because of my condition for this I received help from a councellor to help me deal with things and also I struggled being a passenger and not having control of the vehicle, also at this point I wasn't fully aware of all the treatments available to me, I tried massage as my shoulders and top half of my back and neck are very very stiff whereas my lower back is very tender to touch so gentle massage on my lower back to prevent setting the pain off!(I have massage 2 times a month depending on how bad I am) I have had acupuncture and reflexology which I found helped but only short term as well as the massage is short term relief. But every little helps. I have heat packs and pads and support belts and chair supports to try and make everything as easy and as comfortable for myself whether I'm at work or at home. I have also had cortazone injections into both of my sacroiliac joints which is a mixture of steroids and anaesthetic I found these worked amazing for me I was around 6-9 months with next to no pain and I finally felt I had a break from my pain which also helped me cope better mentally. Over time I have learnt to accept my diagnosis. I have Also been diagnosed a little while later as this I think is part of my condition I have developed Hip bursitis in both hips but my right side and right hip are my most painfullest and I have had a cortazone injection in my more sorest hip also.
    The pain can go down my leg and my knees
    I was told by the specialist when u feel ur injections are wearing off and you are beginning to feel your pain again to come back for more, and this is what I did I was having better quality life I was happy!!! Pain free!!! However they said they didn't want me on these anymore and suggested anti TNF injections which I am having my first one performed by a nurse who is coming to my house tomorrow!
    My specialist has advised and they are keeping track as well as my physio that I have been goin to for 6 yrs to that my sacroilitis could turn in to Anklosing spondylitis.
    Anklosing spondylitis is said to be hereditary but my family have no history of this!??
    Fair to say I'm a little bit nervous but who wouldnt be!? My back condition is a big part in my life as it has took on such a big affect!
    my state of mind is if it's going to help me then what's a little under the skin injection whethere it stings or not I will do anything to be able to be pain free and live my life like a normal 21 yr old should and even to wear a pair of heels on a night out and not regret it and be in agony the next day!!! Would be a treat!! The cortazone injections I had in the past were between my joints! And had to be done by X-ray so I believe I can cope with a few seconds of stinging and a under skin injection!
    Hope my general brief story might help some of u out there who are finding it hard to accept.....that it is possible to accept and that ur life isn't 'over'! There is help and treatments out there! And take care of yourself I always tend to feel pain more after doing something the day after I avoid heavy lifting too at work etc and make sure u tell ur work place so they are aware of ur needs etc.
    Write bk people on any info on anti TNF do they work?
    Thanks Katie xxx
  • Katielawson1000Katielawson1000 Posts: 11
    edited 30. Nov -1, 00:00
    Hi
    In addition to my post above ( this was posted a few months ago but have posted it on this forum as its for a young person struggling to accept I wanted you to see my story)
    I've been on my anti tnf inejections for a few months now and they seem to be working n I feel great well a hell of a lot better pain wise..... Obviously I still every now and then take my co codamol and inflammatory meds when I have a little pain (to keep on top of them mainly to help myself really anything to reduce my pain) or time of the month as my back is always bad then!! And I still take things easy but they really have worked for me so far so good.
    One thing I did have to come off then for a month or two when I came Ill as ur immune system is lowered by anti tnf. I came off the injections to get myself better then went back on them recently.

    My first injection when I first began anti tnf at the start of my anti tnf treatment went well the nurse was with me to watch over me as I would be doing the injection on my own from then on... Everyones symptoms will be different but here were a couple of mine ... I felt a lil light headed but nothing I couldn't deal with, in and out of feeling slightly sick and a tiny bit of upset stomach the main symptom for me was a strange metallic taste in my mouth for a day or two which wasn't very pleasant but this happened on my first 2 injections but now I am use to it... but at the time of my first injection I dealt with it n then I was fine and after my second injection I felt it starting work I did not expect it to be that quick! I feel a happier person now.....

    Note : I have just gone back on them from being I'll with a cold and upset stomach bug

    If anyone has any questions please do not hesitate to ask and I will get back to u when I can. Xxxxx

    P.s a good tip take your anti tnf injection 2-4 before going to bed this way your can sleep off if and any symtoms :D xxxxx
  • Katielawson1000Katielawson1000 Posts: 11
    edited 30. Nov -1, 00:00
    Sorry 2-4 hours before bed to sleep off if and any systems xx :D
  • jordanr111jordanr111 Posts: 3
    edited 30. Nov -1, 00:00
    Hi I was diagnosed in 2008, and its taken me until today to accept it. its a process, it will take time. stay strong.

    jordan x
  • Croskell18Croskell18 Posts: 3
    edited 30. Nov -1, 00:00
    Hey, im not a mum myself but im now 18 and have suffered with arthritis for nearly 6 years now and safe to say we all struggle, ive just joined today as im begining to struggle with what is my life due to alot of know backs this week, one feeling like crap, trying to act like a normal 18 year old and trying new treatments, i would love to say it get easier but i wud be lying, i have learnt to sort of deal with it but still have my days of wanting the old me back and taking out on those i depend on. hope things fall into place for you and become easier to deal with, all the best x you will find your own way of dealing with it :D x
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