Completely lost

Hi all,

Im sorry if none of this makes sense, I will try to make it short and sweet. After a long long time of feeling absolutely awful (I'm 21 and have been ill for about 11 years now), with the past year of it getting worse, doctors, inc. a rheumatologist, have come to the conclusion that I have fibromyalgia and ME/CFS. They went through the route of lupus etc, put me on hydroxychloroqine which has taken away a lot of the pain and they have now signed me off of work. I feel retired and I am only 21! I have tried to be positive but I'm struggling. My partner goes off to work and I cant help but feel a little lonely and a tad envious (not in a bad way).

I am mainly writing this for any support anyone can give but mainly to find out if anyone else has been signed off and what they do to keep themselves and their minds busy. It doesn't help when you suffer from depression so me sitting at home boring my dog doesn't always help.

Im sorry that was longer than I thought it would be but thank you for reading this far!

Keep well.


13 Replies

  • Hey Lou

    I know exactly how you feel. I'm only 23 and recently got diagnosed with M.E And fibro. Some days I feel like an old lady lol

    I have tried to get back to work and stuff but I am realising it's just not possible. I haven't worked for over a year. I've found trying to keep up with friends and family really helps. Going out for lunch a walk. Even just inviting them round for a chat on bad days or calling them up. Or if you have any hobbies that could help?

    I do yoga, enjoy writing and getting into music. Even trying to teach myself guitar though it's too sore sometimes. Taking up new interests can be the way forward.

    I know it's really frustrating not being able to work, but just remember it's not your fault and you are doing what's best for you :)

    Message me anytime if you just want a chat or to let off some steam on a particular bad day.

    Shaunna xx

  • How lovely of you, thank you so much! The guitar idea is great I will give that a go, my partner has one lying around ;) Thank you, you too. Its great to be able to chat with someone who is going through the same thing!

    Lou xx

  • Aw you're welcome :) it is good to talk about it with you too! Think it's difficult at our age, everyone inviting you here and there. Expecting you to be upto everything trying to get pals and family to understand can be annoying.

    Yeah I ordered a guitar book on amazon and just used YouTube videos lol its a fun way to put yourself in a better mood I do struggle with my mood sometimes.

    It is refreshing to talk to people who truly understand. :) xx

  • Hello Lou, I think we all go through the what now phase when we can no longer work.

    I was 57 when I realised that i would no longer be able to work.

    I have always loved making things and now with my new skill of being able to use a computer a whole new world of crafts and hobbies opened up, To make it better I discovered Pinterest, where i can store all these discoverys. Or I spend ages searching for more treasures to pin.

    I now have pinned more hobbies and crafts than I will ever have time to do.

    But am still looking.

    Give Pinterest a try, you may even find instructions for playing guitar.

    Hugs sue xx

  • Thank you both. Both extremely helpful.

    Too right, I am just resorting to saying I don't like going out now-its a lot easier!

    Pintrest is a great idea I forgot about that. Thank you :)

    Lou xx

  • Hi Louyoung, when i became too ill too work aven part time hours i signed up for classes at my local college. I only did one class at a time but i now have further qualifications and can make corsets, something i had wanted to learn for a long time. I also like to think that i may be able to return to the world of the employed if i can gain enough control over my disabilities, so it would be even more useful. Fingers crossed, you never know. I also listen to relaxation cds and practise deep breathing which keeps me in a better mood, so i am more able to deal with the pain/exhaustion.

    Wishing you all the best,


  • Hi louyoung92

    I am so sorry to read of your pain and loss for the life that you once had, and I know from first hand experience how painful and difficult it can be to make adjustments of this nature. I was wondering if there was something that you could possibly do from home for a couple of hours a day just to give you some confidence and a greater sense of self worth? It may help life your depression if you could maybe do some computer work? Or some typing / input from home for a company? Maybe this is worth looking into?

    I had an incredible career that was the envy of most, I am still an author and write, but I followed the commercial side of my work and my career was fruitful, hectic and the so, so, enjoyable. However, I have been forced to let this side of my work go, and I miss it with all my heart. It feels like a bereavement whereby I have lost someone so dear.

    I want to wish you all the best of luck with your endevours to find what you deserve and desire.

    All my hopes and dreams for you

    Ken x

  • I can only work part time, my hubby can not work. We took up hobbies. He draws, I paint, study herbs and oils trying to find a way to deal with fibromyalgia.

    You are so very young, I was dx at 24 so I understand how hard it is.

    Try finding a new topic to learn about, join a support group. These are things that help us.

  • Thank you all again for your kind replies. They are all very useful. I have not long finished uni (foundation degree) something that I had to be signed off for. Although, I am contemplating taking up a home study course to complete my degree.

    Thank you all again. X

  • Hi Lou,

    I got a mobility scooter, an 8 mile an hour one so it's rugged enough to take my dogs for a walk over the fields and woodland as well as get me to town and around the shops so I'm not reliant on any one else. I've done some college courses, being signed of means they are subsudised so even the most expensive ones are under £30. I've done, some beauty related courses ( that was my proffesion) so far I've done aroma therapy, Indian head massage, reflexologie and baby massage. But there are many different kinds of courses from creative writing to wood working, languages to cake decorateing and colleges are very good at helping people with limited mobility, energy etc. It's also a good way to meet people who are interested in the same things you are. Staring at the same four walls is not good, I know. If my dogs didn't have to be walked some days I wouldn't get out of bed and all my doctor does is nod and then offer me pills. Pills that if he bothered to look at my current medication needs would show him that I can't take them. Fma and me is a nasty combination but you do get used to it, you do learn where your limits are and what you can do with in those limits without triggering an attack.

    Good luck Lou, we're all here when you need us x

  • So sorry sweetheart. It's not a death sentence but you feel like it at times. Please see your doctor about an antidepressant and if you are already taking one, well sometimes you need to change med's because they aren't working. You may want to go to a pain clinic, as I was at my wits end and they at least made my life bearable. Try not to over do it on the rare good days. Most of all hang in there!!! You aren't alone. Hope this helps!!! xxxx Mitzi

  • Thats brilliant. Thank you all for being so supportive :) It means a lot and has already made me feel a lot more positive.

    Keep happy x

  • I'm so sorry you feel so sad. I was out of work for 2months. I was afraid I wouldn't be able to go back.

    The time I was out I went to PT and

    Tried to motivate myself as best

    I could. Don't give up! Be your own

    Cheerleader! Things can change,

    you just have to try to make the

    best of things and do what you

    can. Hope things get better for you X

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