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Chronic Fatigue Syndrome/M.E. Society

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Original post by laffytaffy
Yeah, I think things are very rarely black and white. I do not like a certain ex's parents who said that he was young and fit what are you doing in a relationship with someone who is disabled? as if that was all I was! I've generally been quite lucky with ex's parents I think though! I'm sure I will find someone else.... I'm not sure if I should try and stay single until I've graduated now though...
my ex and I got together when we were 17/18 and so the problem was timing probably for us. I went to University, and some of my earlier posts on here were from that time. I didn't stick at university due to unforeseen circumstances. But hey ho..the time coming back from leaving university was difficult, finding work and such like but I am happy now and not in pending debt. Sadly we split after almost 7yrs together. I hope that we can work something. But had we not met maybe I would of gone to university had a completely different life. I think of The Notebook..haha.

I've got my cwk grades back, from after the break up. I got two 2.2's (and one 68 but i'd done most of that before the breakup).... the lowest coursework grade I'd had before this was a 65... quite gutted, as I was kind of hoping my coursework would bolster me up to still getting a 2.1 for the year. I will find out next week though... if I've just passed my exams I'm looking realistically at a 59 which won't be hard at all to get up to a 2.1. However, if I've failed them... it depends how bad the fails are but considering dropping out :frown: there's really no point in getting a degree I feel if I'm going to get a 2.2... I'm capable of more (grades have ranged from 78 to 48) and uni has been such a struggle to get through, I don't want to keep struggling if the results aren't even worth it (I feel like they were worth it for a-levels).

Don't be so hard on yourself. You did your best and coping with the health problems too. Don't let the small things get you down. break ups are hard and add that to studies I'm sure you did your best. Stay strong and work as hard as you can but be mindful of your health :smile: Good luck!

Ooh unpaid work trial doing what? I'm glad he's referring you :smile: keep me/us updated!


Unpaid work in research/fundraising :smile: rewarding and fun but damn tiring as out of practice lol..me too and his emails seem on par with someone taking m seriously. Will do :smile:


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(edited 8 years ago)
Hi, was just wondering if anyone had any suggestions for my situation?

My symptoms haven't been too bad over the last year as long as I don't over do it and get enough sleep and that. I moved into halls for my uni 5 days ago and although they're really nice my housemates keep having parties that go on until 5 am... Which means I'm not getting much sleep which is making my symptoms worse. Even for someone without CFS it's not nice being kept up until early hours of the morning. I've tried to talk to them being nice about it, asking them to keep it down after midnight and that, but they haven't. The halls secruity even got involved last night because they were being so loud and they didn't even keep it down then. I don't really know what to do.


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(edited 8 years ago)
Original post by charlotto
Hi, was just wondering if anyone had any suggestions for my situation?

My symptoms haven't been too bad over the last year as long as I don't over do it and get enough sleep and that. I moved into halls for my uni 5 days ago and although they're really nice my housemates keep having parties that go on until 5 am... Which means I'm not getting much sleep which is making my symptoms worse. Even for someone without CFS it's not nice being kept up until early hours of the morning. I've tried to talk to them being nice about it, asking them to keep it down after midnight and that, but they haven't. The halls secruity even got involved last night because they were being so loud and they didn't even keep it down then. I don't really know what to do.


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Is it possible to ask housing officer to move you..to move locally into a spare room deal with a quieter experience near university?


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Original post by Quiet _One86
Is it possible to ask housing officer to move you..to move locally into a spare room deal with a quieter experience near university?


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Not sure, I'll have to look and see. There was a quiet halls and I applied for that on disability grounds but didn't get accepted and ended up at the main halls


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Original post by charlotto
Not sure, I'll have to look and see. There was a quiet halls and I applied for that on disability grounds but didn't get accepted and ended up at the main halls


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Maybe whilst you look get your GP on board by writing them letter and ask them to give you a statement of verification on your health and stress the need for a quieter and less stressful accommodation!

Failing that look in local room only deals and if you can see them before you go for it..I stayed in a house share and it was by far the best option for me..Double bed, en-suite & garden view/ground floor..I wasn't poorly then but I needed my privacy and sleep! Yes there were noisy nights but not uni students excessive!

Good luck!


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(edited 8 years ago)
Original post by charlotto
Not sure, I'll have to look and see. There was a quiet halls and I applied for that on disability grounds but didn't get accepted and ended up at the main halls


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Uni's have a duty of care to place you somewhere adequate to your disability needs (and yes CFS counts) . They will be able to do something - when I was having problem with road sewer work (out of uni control) they would have placed me on a priority list to move and took into account my needs (but it was only supposed to be 6 weeks so I thought I'd put up with the 6am noise . In the mean time, they gave me another room in my building that the cleaners used that I could sleep in (away from the noise). I am quite shocked they didn't try and place you somewhere, 'quiet' in the first place.
Original post by Butternuts96
It . Hurts . To . Type .


*hugs*

I know you feel.

I'm lucky enough to be having a massage tomorrow.

Have you tried taking magnesium supplements (research suggests there is a deficiency in all chronic pain conditions) ?

When I hurt less, I'm going to type up my research. I've also got some notes on what is being taught to psych students at my uni on the condition which makes an interesting read (but also wtf why is it on the neuropsychiatry module) if anyone is interested.
I've just ended up taking a second gap year because of this, so any advice on stuff I could be doing to try and get a bit better, or in general? I'd rather not go down the food sort of route if I can help it but anything else I'm willing to try. I'd love to be able to get a part-time job at some stage but there's no way I'm well enough for that yet. So far I've managed to cause useless to relapse, got in (even more of) a complete mess mentally then got a cold that almost put me in hospital so hopefully the rest of the year is an improvement! :redface:

Also, has anyone had a tilt table test and what was it like? I've got one in a couple of weeks, have a feeling it was talked about on here a couple of months ago so will check when I'm on my laptop later if I remember.


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(edited 8 years ago)
Original post by Butternuts96
It . Hurts . To . Type .


Take it easy, can you not use dictaphone software? Do you use smartphones or laptops..the software is there if you need to help with the typing pain.

Original post by furryface12
I've just ended up taking a second gap year because of this, so any advice on stuff I could be doing to try and get a bit better, or in general? I'd rather not go down the food sort of route if I can help it but anything else I'm willing to try. I'd love to be able to get a part-time job at some stage but there's no way I'm well enough for that yet. So far I've managed to cause useless to relapse, got in (even more of) a complete mess mentally then got a cold that almost put me in hospital so hopefully the rest of the year is an improvement! :redface:
maybe volunteer or something, and that way you can be flexible for them, and yourself, and listening to your body if it gets too much. Key thing here is to pace and know what's too much for you. I would say take your time, and know that you'll get there eventually in whatever way, everyone's journey is unique so try not to compete with others, and be pushed/influenced to be too.

Also, has anyone had a tilt table test and what was it like? I've got one in a couple of weeks, have a feeling it was talked about on here a couple of months ago so will check when I'm on my laptop later if I remember.
tilt tests aren't too bad, aside from the fact your standing for a long period of time, try not to resist the sensations, allow the body to react to how it feels, and be sure to communicate to the nurse how you're feeling, as she wants to see results and reactions to how you're feeling, and this gives them a more accurate result. I struggled to allow my body to give them a clear picture of what was going but it was obvious I was resisting, epic fail on my part. Good luck, and let me know how you get on.
(edited 8 years ago)
Original post by Quiet _One86

maybe volunteer or something, and that way you can be flexible for them, and yourself, and listening to your body if it gets too much. Key thing here is to pace and know what's too much for you. I would say take your time, and know that you'll get there eventually in whatever way, everyone's journey is unique so try not to compete with others, and be pushed/influenced to be too.

tilt tests aren't too bad, aside from the fact your standing for a long period of time, try not to resist the sensations, allow the body to react to how it feels, and be sure to communicate to the nurse how you're feeling, as she wants to see results and reactions to how you're feeling, and this gives them a more accurate result. I struggled to allow my body to give them a clear picture of what was going but it was obvious I was resisting, epic fail on my part. Good luck, and let me know how you get on.

Yeah I'm trying to sort some volunteering, I live in a small town though and obviously fairly limited in what I can do so proving easier said than done. Hopefully I'll find something though. I'm getting slowly better at pacing, still not very good at it though.

I'll bear that in mind, thank you! My instinct tends to be to just resist everything as you say and I'm completely rubbish at describing how I feel but I'll give them a go, thanks. Sorry yours wasn't good- how are you doing these days anyway? Feel free to PM me any time if you want :smile:



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Original post by furryface12
Yeah I'm trying to sort some volunteering, I live in a small town though and obviously fairly limited in what I can do so proving easier said than done. Hopefully I'll find something though. I'm getting slowly better at pacing, still not very good at it though.

I'll bear that in mind, thank you! My instinct tends to be to just resist everything as you say and I'm completely rubbish at describing how I feel but I'll give them a go, thanks. Sorry yours wasn't good- how are you doing these days anyway? Feel free to PM me any time if you want :smile:



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I'm good thanks. Working on this new role has its challenges but I'm thinking its time to part ways with it because it's not what I signed up for tbh with you! Stay strong and be mindful to rise above it all! Keep mentally active and socially contactable :smile: sounds strange but having a good network of people who understands then it's all good! I do mindfulness and short walks to get out and enjoy what's around keeps me grounded. Granted I have wobbles but who doesn't! Good luck and sure thing if you need anything. I don't use PMs myself but here is ok :smile:


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Original post by Quiet _One86
I'm good thanks. Working on this new role has its challenges but I'm thinking its time to part ways with it because it's not what I signed up for tbh with you! Stay strong and be mindful to rise above it all! Keep mentally active and socially contactable :smile: sounds strange but having a good network of people who understands then it's all good! I do mindfulness and short walks to get out and enjoy what's around keeps me grounded. Granted I have wobbles but who doesn't! Good luck and sure thing if you need anything. I don't use PMs myself but here is ok :smile:


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Good! Really good to have tried it anyway and know more of what you're capable of, and possibly what to look for in the future- not being what you thought is annoying though. Yeah people can make a huge difference, I definitely need to get better with that as I have a tendency to just isolate myself. Walks are amazing! Mindfulness is growing on me too, but walks honestly keep me sane even if I can't always manage very far, or at all. Good luck you too, fair enough on the PMs :smile:


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I don't have CFS (I don't think), but I do have Ehlers-Danlos type 3/hypermobility, and that often has fatigue as a major component. How do you guys cope with it? It's getting in the way of university and I can't fail this year as I'm final year. :frown:
Original post by Pathway
I don't have CFS (I don't think), but I do have Ehlers-Danlos type 3/hypermobility, and that often has fatigue as a major component. How do you guys cope with it? It's getting in the way of university and I can't fail this year as I'm final year. :frown:


Touche my friend aside from not going to University. My main component is pain and fatigue. I find the physical side to the condition harder to overcome but as a consequence I'm mentally exhausted of late. Feel free to reply and we can compare notes and see how we can help each other out!
Original post by Quiet _One86
Touche my friend aside from not going to University. My main component is pain and fatigue. I find the physical side to the condition harder to overcome but as a consequence I'm mentally exhausted of late. Feel free to reply and we can compare notes and see how we can help each other out!


I've mostly come to terms with the pain component (I have a weirdly high pain tolerance), apart from when it's severe. But the fatigue is just insane lately and I'm bed bound quite a lot of the week rather than maybe a day a week (which is bad as I technically live alone/am in halls..). It's not like I've even done anything strenuous, so the fatigue is out of this world! I just don't know what to do anymore. :frown: And that'd be great, thank you!
Original post by Pathway
I've mostly come to terms with the pain component (I have a weirdly high pain tolerance), apart from when it's severe. But the fatigue is just insane lately and I'm bed bound quite a lot of the week rather than maybe a day a week (which is bad as I technically live alone/am in halls..). It's not like I've even done anything strenuous, so the fatigue is out of this world! I just don't know what to do anymore. :frown: And that'd be great, thank you!


I find meditation and mindfulness helps me enormously - warm lavender Epsom salt baths help too. Calming minds and small walks in fresh air before bed if you can. Taking someone with you to avoid the wobble!


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Original post by Foo.mp3
Other than checking out my aforementioned protocol, I seriously recommend that all PWME consider the role that RFR EMFs may be playing, as in my case:

“Initial Results
Post-exertional malaise (PEM) (e.g. muscle recovery) improved noticeably within days. After a couple of weeks I further noted that my:

• Gastrointestinal system appeared healthier ~ less rumbling/bloating and firmer stool consistency
• Sleep was deeper/less disturbed/more restorative ~ less muggy/sluggish than usual in the AM in particular
• Eyes were not sore/tired as they usually are and face was less droopy ~ enabling more engaging eye contact
• Spine/nerve roots felt less 'wound up' ~ decided to try working out with weights which was unusually well tolerated
• Fairly frequent (low-intensity AM) headaches and mild testicular sensitivity (which had persisted for many years) had abated”

This is an interesting thought. I doubt it's making much of a difference to me as I live in a very rural area that can't even get phone signal half the time, but could still be playing a bit of a part.

Dietary modification is useful in many cases, and need not be too extreme :smile:

Oddly enough I've noticed how much worse I am (particularly stomach-related stuff) after I've had a lot of dairy a couple of times since I wrote that so probably should look into it. I don't eat a lot of it normally though so who knows :dontknow:

The test I had was pretty intense, not gonna lie, although I understand that rarely do PWME make it through the whole thing

Yeah, I lasted 5-10 minutes then passed out which wasn't great, at least they saw what happened though I guess. Haven't had the results yet but the people doing it seemed pretty sure it was PoTS.

You’re certainly not alone – one of the most challenging aspects of this condition is the fact that during bad spells we may look fairly normal, others may want to know what’s up/may (mis)interpret our ‘conservative’ attitude as unduly obstructive/antisocial, and yet we struggle to articulate ourselves properly/they have little basis upon which to be able to empathise! This is why I frequently suggest that friends/community members/clients share the following with others:

A simple awareness raising/informational booklet produced by my local ME/CFS support group


Yeah exactly, I spend my life trying to 'act normal' but that's really not always a good thing! I haven't had chance to watch the video yet but that booklet is amazing thanks, I'll use that! Thank you :smile:



Also @Pathway, Quiet one has replied much better than I can think of but I find trying to pace myself/do a similar amount every day is by far the best thing I can do, I'm still pretty terrible at it though. Sorry for being so useless recently too but PM me if you want :hugs:
Original post by furryface12
Also @Pathway, Quiet one has replied much better than I can think of but I find trying to pace myself/do a similar amount every day is by far the best thing I can do, I'm still pretty terrible at it though. Sorry for being so useless recently too but PM me if you want :hugs:


Thanks for the name drop lol :smile: I'm hopeful we all find our footing soon! Listen to your body and gauge on your own feelings and such to move forward :smile: good luck everyone X


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Original post by Quiet _One86
I find meditation and mindfulness helps me enormously - warm lavender Epsom salt baths help too. Calming minds and small walks in fresh air before bed if you can. Taking someone with you to avoid the wobble!


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Yeah, they do sometimes help. My MH issues have been getting in the way a lot lately. Also, I live on campus, no baths. :P I am trying to walk (when I can), just so fatigued. Like, I wake up, and I'm ready to go back to bed again. haha. Oh man, the wobble, yeah, I'm forever losing my balance. :lol:

Sorry for taking so long to reply, didn't see that you'd replied! :hugs: How are you?

Original post by furryface12

Also @Pathway, Quiet one has replied much better than I can think of but I find trying to pace myself/do a similar amount every day is by far the best thing I can do, I'm still pretty terrible at it though. Sorry for being so useless recently too but PM me if you want :hugs:


Yeah, I've been trying to keep it consistent, some days it is impossible though. :frown: You're not useless, you're always welcome to PM me too. :hugs:
Original post by Pathway
Yeah, they do sometimes help. My MH issues have been getting in the way a lot lately. Also, I live on campus, no baths. :P I am trying to walk (when I can), just so fatigued. Like, I wake up, and I'm ready to go back to bed again. haha. Oh man, the wobble, yeah, I'm forever losing my balance. :lol:

Sorry for taking so long to reply, didn't see that you'd replied! :hugs: How are you?


You ensure to keep on top of what you can. and don't let MH win. It helps to talk to someone, and coming on here and keeping some perspective distance from the stress and strains of Uni life and all else in between I'm sure you'll be ok. I'm here to listen and help where I can. Be sure to try and get somewhere with a bath next year. Don't do too much too quickly, paced and graded to different lengths and learn what works for you. I have PoTS so balance is a ongoing balance also. Don't worry about the length of reply. I'm alright - working on my next plan to keep my mind going strong and routine is monitored and controlled to avoid overdoing it! Keeping a journal of pain, exercise, symptoms and activities. Daily/Weekly planning and monitoring. Good luck :smile:

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