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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Cap413

    Bedbound and literal pain in the bum area

    Hello everyone I've been bedbound for the past 5 months or so, only able to sit out of bed for an hour or so every day, but even then I'm sat in a chair. Over the past couple of weeks, I've started getting pain in my bum and in that general area. It isn't pain exactly, just pressure and...
  2. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    Hi @Basilico what you wrote there really touched me, and really resonates with how I feel that my encounters with people are. I've also gone through the same soul searching. I'm a good listener and I think that I have a really open friendly face and I think that attracts people to me as they...
  3. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    @Snowdrop oh lol, I'm so sorry! :D I just assumed (not sure why) that you would know what I meant when I said 'North'....D'oh!! It is Leeds. And I know, I have thought I need to put my location in my signature as it is really useful when other people know where you are, as like you say, they...
  4. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    @Invisible Woman Wow isn't that the case!! God, you've put it so well just in a few sentences. A friend in need is a friend indeed, that's what this situation has made me think, and I don't like that because it's making me distrustful and cynical of other people and their motives. I hope I...
  5. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    @boombachi How lovely that you took the time to message and it's your sons birthday - I hope you have a really lovely day today and he has a great day. I'm sure he will with such a lovely caring mummy! Thanks for the link to the spoonie club....What a fantastic idea! But what a shame, by...
  6. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    @Snowdrop, thank you.... no, they are from different countries, one is from Spain and one from Italy, and both have really strong family bonds, so they go back whenever they can. I don't have strong family bonds, so that's another really uncomfortable conversation as they don't understand why I...
  7. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    I know!! It's so so helpful. There's nothing more healing than speaking to someone who knows exactly what you are going through. I have just heard that I am possible top 10 for a few bungalows I have bid on so fingers crossed :D
  8. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    Hi @Daffodil thanks so much for your message and kind words... Even though it was horrible, in a way I'm glad that it happened because if it hadn't, I would never have reached out in desperation and started this thread and then never would have gotten in touch with so many wonderful, kind...
  9. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    Hi @Basilico thanks for your message. In a previous reply to @hellytheelephant I did go into a bit of background about what has happened prior to the encounter I wrote about and my relationship with both girls. When I wrote that it was probably my fault and that I didn't communicate, that's...
  10. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    Hahaha! Thank you, I like that. I guess if I think about it, this is kind of an exclusive club with a very specific criteria of entry. I do like the community feel on here, it is very open and kind. I think that's what I need right now. Thank you for your message though. I am feeling very...
  11. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    Hi @Snowdrop this is what really hurt me, and I do feel that it was so very mean. I think the justification was probably that 'she wouldn't have come down anyway' so there's no need to even tell her. But just a quick text would have made all the difference and not made me feel so isolated...
  12. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    Hi @Kati thanks for that. It is difficult isn't it. Especially when you have had long years of friendships with people only for them to 'ghost' you once you become ill. You truly do find out who your friends are when you become unwell. I'm sorry you're also going through it, sending hope and...
  13. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    @daisybell :hug: :hug:
  14. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    @tinacarroll27 Thank you for sharing your experience of how you managed to find housing. I do have a really good priority with the council luckily but I didn't realise that Housing Association was something different! So I have spent months looking on the council website but not finding...
  15. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    Thanks @erin :hug: here's one back. You're right I just need to get my own place sooner rather than later, I'm going to really focus on that this week. I'm so overwhelmed with all of the support I'm getting here, it really means a lot.
  16. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    Hi @Hugo thank you for your message. I'm really sorry to hear about the breakdown in your relationship, I can imagine how difficult it must have been for you to continue living with your ex partner. It's horrible isn't it when you feel as though you're not wanted or unwelcome in your own home...
  17. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    @hellytheelephant thank you for the hug :hug: a tight one back No, we weren't friends before we moved in together. My housing story is a long and painful one.... When I first got unwell and had to quit my job, I had to move out of my flat as I couldn't afford it anymore and moved in here...
  18. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    Thanks, here's one back :hug: :)
  19. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    @trishrhymes thank you for your kind words too.... the thing is I know it's a difficult situation. On both sides. When I relapsed badly in January I did try and talk to both my housemates about how I was feeling, but whilst one of them is more open to talking about things like this, the other...
  20. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    @Pendergast thank you for your kind words. I'm sorry that you're going through something similar. I'm 31, and I have also lost friends and boyfriends and am pretty much on my own right now. I don't have family either. It's tough isn't it. I'm lucky in a way that I get some benefit from the...
  21. Cap413

    Can anyone recommend a good wrist heart rate monitor?

    @soti I have a Fitbit Charge HR, the newest model. It is not bad actually with measuring HR. I did a lot of research before purchasing it, and although it's only supposed to be accurate to 4 BPM, I always wear it when at the Doctors having my Blood Pressure taken and the HR reading on my...
  22. Cap413

    So isolated and alone living in shared accommodation with severe CFS/ME

    Hello everyone. I'm living in a shared house and I have severe CFS/ME so am bedbound for most of the day. I'm having such a difficult time right now, and I feel so stuck and lost in life. When I first moved into this house, my CFS was moderate and more manageable and my housemates didn't know...
  23. Cap413

    Leeds ME/CFS clinic (UK)

    @JohnM Thanks for the information, and I don't see it as a criticism at all, any information I can gather about Sue Pemberton and her approach to treatment from past patients is a help, to know what to expect. I think by now I have enough experience of the NHS to know that they won't give me...
  24. Cap413

    Leeds ME/CFS clinic (UK)

    I spoke to Sue Pemberton last week as I am trying to get my treatment transferred to the Yorkshire Fatigue Clinic from the Newsam Centre. I spoke to her at length and found her to be understanding, supportive and caring. I explained to her the focus of treatment I have been receiving at the...
  25. Cap413

    Leeds ME/CFS clinic (UK)

    Thank you. This is all very useful to know.
  26. Cap413

    Leeds ME/CFS clinic (UK)

    Hi Esperanza Sorry for the delay, you gave me a lot to think about and I've had a couple of hospital appointments, social care appointments and mandatory resting. Can I just say in one day speaking to you and your husband I have learnt more about what I can access in Leeds than I have in the...
  27. Cap413

    Leeds ME/CFS clinic (UK)

    Hello Esperanza Thank you so much for your reply. I'm really glad that you're having a positive experience at the Yorkshire Fatigue Clinic.... it sounds exactly what I need and your current health sounds an awful lot like where I currently am so perhaps that's the best route for me. I did see...
  28. Cap413

    Leeds ME/CFS clinic (UK)

    Thanks for this reply. I will PM you to talk more about this and perhaps you could put me in touch with others who have had similar experiences? As you say CBT was helpful in helping me understand some of my own personal barriers to dealing with this illness and helped me recognise that I do...
  29. Cap413

    Leeds ME/CFS clinic (UK)

    Yes this is exactly the case that I state with my OT whenever she starts telling me to start grading up. I agree that pacing and grading *might* be helpful if performed properly and with the proper support if the patients CFS/ME symptoms are mild and they have that extra bit of energy to start...
  30. Cap413

    Leeds ME/CFS clinic (UK)

    Hello everyone... I'm a new member to the site and this is my first post. I'm from Leeds and I have suffered with the condition for the past 12 years but only diagnosed 2 years ago. My health has steadily declined over the past year and a half and I'm currently bed bound. I just wanted to add...