Hi, my name is dijon_di!

dijon_di
dijon_di Community member Posts: 18 Connected
Morning!

I was diagnosed yesterday with HSD and fibromyalgia after 15 years of trying to get answers for what is wrong with me. I have used crutches due to weakness in my right leg but over the past year my arms have been so sore that I have been unable to use them. I have no social life any more, 2011 was the last time I went out with friends. Since then the pain and fatigue have had me mostly housebound. I am twice the size I used to be and I know that doesn't help but nothing seems to help. I am desperate to exercise but anytime I do, I end up having to rest for days. It just feels so lonely right now. 

I also have combined adhd and since that diagnosis and getting treatment, I managed to return to conventional study at university. I started to plan to get into work again but the way I feel I am unsure if I could maintain a job. I feel scared to plan for the future when things are so uncertain. 

Would love to chat with others feeling the same way and if anyone has any advice I'd be glad to hear it!

Diane 

Comments

  • dijon_di
    dijon_di Community member Posts: 18 Connected
    I should have added a little about me. I'm 41 and have 3 kids who are 17, 15 and 11 . 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,443 Championing
    Welcome to the community @dijon_di :) It's great to have you on board!

    How are you feeling about your new diagnoses? Some other members on the community have mentioned having mixed feelings when receiving a new diagnosis. 

    As you've mentioned being housebound, I just wanted to check whether you're able to get all of the essential items you need in, such as food and medicine? 

    Have you spoken to your doctor about your weight gain? 

    We're a friendly bunch, and many of us have experienced isolation and loneliness, so you're in good company :) I'd definitely recommend that you check out the coffee lounge if you're looking to chat to likeminded people and build new connections. 
  • dijon_di
    dijon_di Community member Posts: 18 Connected
    Hi!
    I was relieved to get answers whilst at the appointment but then got quite upset when I got to the car and now I feel annoyed that it took so long to get the answers I'd been looking for. I've struggled so much bringing up my kids on my own and have felt guilty for not having the energy to play with them and go on trips. We did do things when I had better days but as the years have went on the fatigue has impacted our time together. The kids say they don't mind but I do! I just try not to be too hard ob myself. I did the best with what I have. 

    I order my shopping online, although at times even having the concentration for that can be difficult and it's time consuming. And the cost of delivery is getting shocking - I try to use Iceland most of the time but they don't have everything we need specifically toiletries.  My dad helps bring meds and shopping when he can but he's getting too the stage in his life he is struggling to manage.

    I'll pop into the coffee lounge and say hello :)
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hello and welcome from me as well @dijon_di and thanks for being so open and honest about how you're feeling after your diagnosis. I hope you enjoy getting to know everyone in the coffee lounge.

    It might be worth following up with your GP when you feel ready, about the ongoing management of your conditions, and what support might be available to help, especially on days which are more of a struggle than others. 

    You can always ask about a needs assessment referral for support, if you're worried about your dad struggling with shopping and meds.

    I agree the cost of delivery for online shopping can be incredibly expensive! I know there are some supermarkets which offer 'saver slots', cheaper delivery if you request a longer time slot, like between 6pm-10pm instead of 6pm-7pm, and they confirm a specific hour on the day of delivery. That might be something to consider to help save costs if it works for you :) 

    Let us know if you need anything and enjoy spending time here on the forum.

    Alex