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Original post by modalsoul
Hi, I'm new here and have been suffering with what I assume to be mild to moderate cfs/m.e after years of struggling and investigations. I'm planning on going to university this September having taken a gap year for health reasons.
I really want to know what the pros and cons are of living in halls vs private accomodation in terms of having m.e? What are your personal experiences, and living at home is not an option.
Thanks.
I really want to know what the pros and cons are of living in halls vs private accomodation in terms of having m.e? What are your personal experiences, and living at home is not an option.
Thanks.
Hello, from my experience Uni living can be a lot of noise and excitement, and getting used to other people's body clocks when it comes to getting to sleep thus disrupting yours if your CFS is bad with noise tolerances. Then I would wait it out and defer till you have a handle on that. I didn't have CFS at uni but I was a light sleeper and found slight noises disruptive. Private accommodation at least you can cater it around your needs and who you stay with in that time. Maybe a quiet house of 1 person would suit you. Which university are you planning on going to? Perhaps talking ahead of going to the lecturers and let them in on what health problems you are having and how CFS is affecting you now and how it could affect you with your potential studies. Stress can exacerbate the condition. In more ways than one. Good luck and feel free to PM any time x
Original post by xfirekittyx
Hi Firekitty, thanks for the reply, it's helped to know there's someone out there in the same position! Although most people's threads I've read on here who were at university have also dropped out (or wanted to) after the first year which is not so encouraging :/ My course is a bit more spread out as in we have 5 or so coursework deadlines a term but they often only give us the lecture about the coursework a week before the deadline and the deadlines are often clumped together. Unfortunately I was diagnosed too late to have the deadlines shifted around and the support office were unenthusiastic about helping me spread them out. But an exam, a lab report and an essay a week sounds awful to me so I should count myself lucky!
I showed the dla form to my doctor who didn't feel she could statement it, I think because she was reluctant to diagnose me in the first place but I have a referral to a specialist coming up who will maybe give me a statment instead? You are so lucky you were diagnosed ages ago!! I know people don't always understand the diagnosis but at least with a diagnosis things can be done to try things to help. I had no idea they would let you use those kinds of things! I understand what you mean about guilty though, I feel like I'm making too much fuss as is, but guess if you didn't then you'd crash even more badly and be more needy than you are at the moment?
Yeahh, to be fair though, some of my friends have been great, but it's just a bit dissappointing when someone you thought was a great friend decides not to be bothered when you say 'I'm actually pretty ill right now'. People who are jealous though, that's just ridiculous, and really not helpful! That's fantastic though that you have a boyfriend who understands
Thanks for all the advice, honestly it's been helpful
What will make you decide whether you can go back in September or not?And hi to Modalsoul! I can give you some experience of living in halls and am planning to live in private accommodation next year so I can't give an exact comparison but I can give you some idea!
I live in self-catered halls because I can't eat dairy, which has meant a lot of effort in food shopping and cooking but this can be got around to an extent as the tesco delivery is only about £2.50 and if you choose the right meals they can be relatively low fuss. The issue comes in when I still don't have enough energy to cook. So catered accommodation may be more energy efficient but you are limited to the times you can eat, you can't eat little and often, and you have to eat in an upright chair which sometimes I find requires too much energy unless I've rested beforehand. In other respects, I've been lucky in that one of my closest friends lives in my flat and so can fetch little things from the shops for me and has made socialising a lot easier, and in general having friends in the same halls makes seeing friends a lot easier as you don't have to travel far.
On the other hand, private accommodation has its own challenges. Obviously you don't have the catered option but you may find that the house cooks big meals together? Depends on who you live with.
Thanks for both of your replies. The thing I'm most worried about is noise in halls but then or a big student house. I'm okay with cooking although it would be nice to have others share the responsibility. I am planning on applying for the disability loan too but not sure if i would be entitled to it as I'm not diagnosed officially. I will be going to the university of Westminster harrow campus.
Original post by modalsoul
Thanks for both of your replies. The thing I'm most worried about is noise in halls but then or a big student house. I'm okay with cooking although it would be nice to have others share the responsibility. I am planning on applying for the disability loan too but not sure if i would be entitled to it as I'm not diagnosed officially. I will be going to the university of Westminster harrow campus.
Hi sorry, it was just that cooking was the main thing I had issue with. In terms of noise - it's always noisy! Especially at the start of term as people like to go out clubbing and meet new people. It probably varies as to where your university is - as in if there are clubs are bars nearby then it may be noisier as people will be coming and going all the time from around 10pm. But generally it settles down after a few weeks and you actually get used to it as the sounds are generally the same, and this is coming from a very light sleeper! It can be noisy during the day too but not so bad.
Oh and in terms of getting the loan, from my experience they are reluctant to do things without a diagnosis so keep pushing! I really hope you can get this sorted.
Hey I was diagnosed a few months ago after suffering with glandular fever. I think I've coped okay, had to miss a bit of college but its sorted.
The one thing ive had an issue is with exercise. The tiredness means I can't really do too much, so i've been struggling with ideas as ive started to put on weight
Anyone have any suggestions of what exercise I could do to keep my weight down, but nothing too tiring?
thank you
The one thing ive had an issue is with exercise. The tiredness means I can't really do too much, so i've been struggling with ideas as ive started to put on weight
Anyone have any suggestions of what exercise I could do to keep my weight down, but nothing too tiring?
thank you
[QUOTE="kitkat313;41990456"]
Well if you want some more encouraging stories: http://www.actionforme.org.uk/children-and-young-people/student-hub/share-your-story/jamess-story
I found that one quite inspiring personally as he went to the same uni as me (but then annoyingly enough the progress rules have since changed at my uni and they won't be flexible). Also my sister got diagnosed with CFS/Fibro and she just about got her degree. Her uni were really flexible with her though, letting her miss pieces of coursework (which mine would never do!) and she managed to do a weird advanced module thing instead of a dissertation.
Haha no gosh i don't have three deadlines every week! Every six weeks! But then they all fall at once, where as a-levels, I think I handed each piece of coursework atleast a month apart and didn't do any whilst there was an exam looming near! Gosh that sucks, well lucky first year doesn't count? And hopefully they'll be more supportive next time? You should also get in touch with the disability unit at your uni, if you have any problems with your department they should liaise on your behalf.
That really sucks with the recent diagnosis because your new bestfriend should be letters, lots of letters to act as evidence. I must have sent a stack of letters as thick as my hand of with my DLA claim. For DSA I only needed the one though (after my initial letter got rejected for no apparent reason). What you could do is ask for a printout of your medicial history from the GP's secretary because this atleast will be evidence that you have been diagnosed to supplement your letter from a specialist. You don't usually need to ask for a statement they'll send you a letter automatically going through how you were at examination and because it's your first time it should be a really long letter. Hopefully they will examine your strength/stamina or send you to a physio to do that assesment because if they find weakness that will show why you may not be able to prepare a main meal for yourself.
I really hope you do qualify for DLA as i noticed one of the things you struggled with was cooking, and you could use the money for help with that (I am going to!) Do you have any tip for quick non effort meals though cause with me, I'll need to spread the money between that and laundry and help with my room? I was thinking like baking potatoes in advance and then you just have to make a topping. I think I practically lived off instant noodles, toast and pitta and homous when I wasn't up to getting lunch this year.
Yeah catered with me was not a good choice, I wasn't strong enough to carry my food tray and at the beginning of term people I was living with did it and I unintentionally made them feel like I was exploiting their kindness or something and then the catering staff helped me, it just made me stick out like a sore thumb at meal times and oh and my back was bad in first term and I found sitting on backless benches so painful... so I would have to go get a chair...increasing awkwardness. I guess if you have an invisible illness it's best to keep it invisible except to those close friends who will actually be supportive. Yeah my boyfriend did what your friend was doing, he lived two blocks down A couple of times I used tesco's online shopping, it's good for most things except like bread they gave me a loaf that expired the day I got it, and pitta bread the same - which is ridiculous because pitta has a few months of shelf
life.
What will be my decision? I think it's just a wait and see thing. Like I've been constantly getting infections - I've been on antibiotics five times since the middle of january. So I don't even know what my base level is (currently on day 2/7 of antibiotics), as obviously being infected ontop is making me feel worse. I wish there was some sort of 'how to know if you're well enough to handle uni with M.E' guide! What's confusing me though is I already feel like I'm sleeping better at home and have been sleeping a bit less...which on the one hand is positive that I'll recover a lot but on the other hand maybe means me and halls just don't mix. I think we had like three firealarms within the last week one at like 2.30 am >.<
Thanks for saying it's been helpful I feel like I've just been ranting at you! Oh and my boyfriends aunt has M.E which is why he's so understanding. Although it's a double edged sword, his aunt functions pretty highly for someone with M.E, she's reasonably fit and active, so he had a bit of ' if she can do x and has M.E, why can't you?' problem at first but he now understands M.E affects everyone differently and it may even be a whole group of diseases clumped together as one.
Original post by xfirekittyx
Haha I also moved into halls this year and was doing a psych course before crashing! QUOTE]
Hi Firekitty, thanks for the reply, it's helped to know there's someone out there in the same position! Although most people's threads I've read on here who were at university have also dropped out (or wanted to) after the first year which is not so encouraging :/ My course is a bit more spread out as in we have 5 or so coursework deadlines a term but they often only give us the lecture about the coursework a week before the deadline and the deadlines are often clumped together. Unfortunately I was diagnosed too late to have the deadlines shifted around and the support office were unenthusiastic about helping me spread them out. But an exam, a lab report and an essay a week sounds awful to me so I should count myself lucky!
I showed the dla form to my doctor who didn't feel she could statement it, I think because she was reluctant to diagnose me in the first place but I have a referral to a specialist coming up who will maybe give me a statment instead? You are so lucky you were diagnosed ages ago!! I know people don't always understand the diagnosis but at least with a diagnosis things can be done to try things to help. I had no idea they would let you use those kinds of things! I understand what you mean about guilty though, I feel like I'm making too much fuss as is, but guess if you didn't then you'd crash even more badly and be more needy than you are at the moment?
Yeahh, to be fair though, some of my friends have been great, but it's just a bit dissappointing when someone you thought was a great friend decides not to be bothered when you say 'I'm actually pretty ill right now'. People who are jealous though, that's just ridiculous, and really not helpful! That's fantastic though that you have a boyfriend who understands
Thanks for all the advice, honestly it's been helpful What will make you decide whether you can go back in September or not?
And hi to Modalsoul! I can give you some experience of living in halls and am planning to live in private accommodation next year so I can't give an exact comparison but I can give you some idea!
I live in self-catered halls because I can't eat dairy, which has meant a lot of effort in food shopping and cooking but this can be got around to an extent as the tesco delivery is only about £2.50 and if you choose the right meals they can be relatively low fuss. The issue comes in when I still don't have enough energy to cook. So catered accommodation may be more energy efficient but you are limited to the times you can eat, you can't eat little and often, and you have to eat in an upright chair which sometimes I find requires too much energy unless I've rested beforehand. In other respects, I've been lucky in that one of my closest friends lives in my flat and so can fetch little things from the shops for me and has made socialising a lot easier, and in general having friends in the same halls makes seeing friends a lot easier as you don't have to travel far.
On the other hand, private accommodation has its own challenges. Obviously you don't have the catered option but you may find that the house cooks big meals together? Depends on who you live with.
Hi Firekitty, thanks for the reply, it's helped to know there's someone out there in the same position! Although most people's threads I've read on here who were at university have also dropped out (or wanted to) after the first year which is not so encouraging :/ My course is a bit more spread out as in we have 5 or so coursework deadlines a term but they often only give us the lecture about the coursework a week before the deadline and the deadlines are often clumped together. Unfortunately I was diagnosed too late to have the deadlines shifted around and the support office were unenthusiastic about helping me spread them out. But an exam, a lab report and an essay a week sounds awful to me so I should count myself lucky!
I showed the dla form to my doctor who didn't feel she could statement it, I think because she was reluctant to diagnose me in the first place but I have a referral to a specialist coming up who will maybe give me a statment instead? You are so lucky you were diagnosed ages ago!! I know people don't always understand the diagnosis but at least with a diagnosis things can be done to try things to help. I had no idea they would let you use those kinds of things! I understand what you mean about guilty though, I feel like I'm making too much fuss as is, but guess if you didn't then you'd crash even more badly and be more needy than you are at the moment?
Yeahh, to be fair though, some of my friends have been great, but it's just a bit dissappointing when someone you thought was a great friend decides not to be bothered when you say 'I'm actually pretty ill right now'. People who are jealous though, that's just ridiculous, and really not helpful! That's fantastic though that you have a boyfriend who understands
Thanks for all the advice, honestly it's been helpful
What will make you decide whether you can go back in September or not?And hi to Modalsoul! I can give you some experience of living in halls and am planning to live in private accommodation next year so I can't give an exact comparison but I can give you some idea!
I live in self-catered halls because I can't eat dairy, which has meant a lot of effort in food shopping and cooking but this can be got around to an extent as the tesco delivery is only about £2.50 and if you choose the right meals they can be relatively low fuss. The issue comes in when I still don't have enough energy to cook. So catered accommodation may be more energy efficient but you are limited to the times you can eat, you can't eat little and often, and you have to eat in an upright chair which sometimes I find requires too much energy unless I've rested beforehand. In other respects, I've been lucky in that one of my closest friends lives in my flat and so can fetch little things from the shops for me and has made socialising a lot easier, and in general having friends in the same halls makes seeing friends a lot easier as you don't have to travel far.
On the other hand, private accommodation has its own challenges. Obviously you don't have the catered option but you may find that the house cooks big meals together? Depends on who you live with.
Well if you want some more encouraging stories: http://www.actionforme.org.uk/children-and-young-people/student-hub/share-your-story/jamess-story
I found that one quite inspiring personally as he went to the same uni as me (but then annoyingly enough the progress rules have since changed at my uni and they won't be flexible). Also my sister got diagnosed with CFS/Fibro and she just about got her degree. Her uni were really flexible with her though, letting her miss pieces of coursework (which mine would never do!) and she managed to do a weird advanced module thing instead of a dissertation.
Haha no gosh i don't have three deadlines every week! Every six weeks! But then they all fall at once, where as a-levels, I think I handed each piece of coursework atleast a month apart and didn't do any whilst there was an exam looming near! Gosh that sucks, well lucky first year doesn't count? And hopefully they'll be more supportive next time? You should also get in touch with the disability unit at your uni, if you have any problems with your department they should liaise on your behalf.
That really sucks with the recent diagnosis because your new bestfriend should be letters, lots of letters to act as evidence. I must have sent a stack of letters as thick as my hand of with my DLA claim. For DSA I only needed the one though (after my initial letter got rejected for no apparent reason). What you could do is ask for a printout of your medicial history from the GP's secretary because this atleast will be evidence that you have been diagnosed to supplement your letter from a specialist. You don't usually need to ask for a statement they'll send you a letter automatically going through how you were at examination and because it's your first time it should be a really long letter. Hopefully they will examine your strength/stamina or send you to a physio to do that assesment because if they find weakness that will show why you may not be able to prepare a main meal for yourself.
I really hope you do qualify for DLA as i noticed one of the things you struggled with was cooking, and you could use the money for help with that (I am going to!) Do you have any tip for quick non effort meals though cause with me, I'll need to spread the money between that and laundry and help with my room? I was thinking like baking potatoes in advance and then you just have to make a topping. I think I practically lived off instant noodles, toast and pitta and homous when I wasn't up to getting lunch this year.
Yeah catered with me was not a good choice, I wasn't strong enough to carry my food tray and at the beginning of term people I was living with did it and I unintentionally made them feel like I was exploiting their kindness or something and then the catering staff helped me, it just made me stick out like a sore thumb at meal times and oh and my back was bad in first term and I found sitting on backless benches so painful... so I would have to go get a chair...increasing awkwardness. I guess if you have an invisible illness it's best to keep it invisible except to those close friends who will actually be supportive. Yeah my boyfriend did what your friend was doing, he lived two blocks down
A couple of times I used tesco's online shopping, it's good for most things except like bread they gave me a loaf that expired the day I got it, and pitta bread the same - which is ridiculous because pitta has a few months of shelf life.
What will be my decision? I think it's just a wait and see thing. Like I've been constantly getting infections - I've been on antibiotics five times since the middle of january. So I don't even know what my base level is (currently on day 2/7 of antibiotics), as obviously being infected ontop is making me feel worse. I wish there was some sort of 'how to know if you're well enough to handle uni with M.E' guide! What's confusing me though is I already feel like I'm sleeping better at home and have been sleeping a bit less...which on the one hand is positive that I'll recover a lot but on the other hand maybe means me and halls just don't mix. I think we had like three firealarms within the last week one at like 2.30 am >.<
Thanks for saying it's been helpful
I feel like I've just been ranting at you! Oh and my boyfriends aunt has M.E which is why he's so understanding. Although it's a double edged sword, his aunt functions pretty highly for someone with M.E, she's reasonably fit and active, so he had a bit of ' if she can do x and has M.E, why can't you?' problem at first but he now understands M.E affects everyone differently and it may even be a whole group of diseases clumped together as one.(edited 11 years ago)
Hello people 
I've had CFS for...nearly 9 years now...which is actually quite a depressing thought! However, I remain hopeful that I'll complete this degree, and even if I can't teach full time, I can do it part time.
So yes, just thought I'd say Hi, although I have a feeling I've posted in this thread a while ago.
Edit: It's actually been 8 years. Not quite as bad!
I've had CFS for...nearly 9 years now...which is actually quite a depressing thought! However, I remain hopeful that I'll complete this degree, and even if I can't teach full time, I can do it part time.
So yes, just thought I'd say Hi, although I have a feeling I've posted in this thread a while ago.
Edit: It's actually been 8 years. Not quite as bad!
(edited 11 years ago)
Original post by modalsoul
Thanks for both of your replies. The thing I'm most worried about is noise in halls but then or a big student house. I'm okay with cooking although it would be nice to have others share the responsibility. I am planning on applying for the disability loan too but not sure if i would be entitled to it as I'm not diagnosed officially. I will be going to the university of Westminster harrow campus.
I'd invest in some silicone earplugs. I'd speak to your uni, they may be able to put you in a quiet flat. Noise levels can be so different in the same residence in different flats. One of my biggest problems with noise was being right by the front door and kitchen... maybe ask to be away from these things? The rest of the noise issues will be down to people being considerate and unfortunately you can't really control that. The girl who lived above me was a DJ but she was so nice every time I asked her to turn it down. However, other people would talk loudly outside my room in the middle of the night after a night out and repeatedly slam doors >.<
Apart from actually, if that's a campus uni, you don't want a room outside a bar or the SU... I visited someone who was in a first floor flat and had a bar near his room and the loud music vibrated through it till 2am - that was in Reading, but the rooms facing the other side of the building, on the same floor, in the same flat, weren't affected by noise.
(edited 11 years ago)
Original post by Lazuliblue
Hello people
I've had CFS for...nearly 9 years now...which is actually quite a depressing thought! However, I remain hopeful that I'll complete this degree, and even if I can't teach full time, I can do it part time.
So yes, just thought I'd say Hi, although I have a feeling I've posted in this thread a while ago.
Edit: It's actually been 8 years. Not quite as bad!
I've had CFS for...nearly 9 years now...which is actually quite a depressing thought! However, I remain hopeful that I'll complete this degree, and even if I can't teach full time, I can do it part time.
So yes, just thought I'd say Hi, although I have a feeling I've posted in this thread a while ago.
Edit: It's actually been 8 years. Not quite as bad!
Hi! I've been affected a similar time as you! 8 years going on 9 in the autumn. That's a great attitude to have! There's also private tuition - you could control the amount of hours you teach and exactly when you do it
How do you find doing an OU degree?Original post by Snoopop
Hey I was diagnosed a few months ago after suffering with glandular fever. I think I've coped okay, had to miss a bit of college but its sorted.
The one thing ive had an issue is with exercise. The tiredness means I can't really do too much, so i've been struggling with ideas as ive started to put on weight
Anyone have any suggestions of what exercise I could do to keep my weight down, but nothing too tiring?
thank you
The one thing ive had an issue is with exercise. The tiredness means I can't really do too much, so i've been struggling with ideas as ive started to put on weight
Anyone have any suggestions of what exercise I could do to keep my weight down, but nothing too tiring?
thank you
I feel for you
I think in my first year with M.E I put on a stone and a half. I think my body kind of went: tired food = energy 
so I ate a heck of a lot ontop of doing no exercise after the physio made me worse. Generally the advice is start with anaerobic exercise, and do not overdo it. I don't know what you mean by 'can't really do much' - can you expand on that?
Original post by xfirekittyx
Hi! I've been affected a similar time as you! 8 years going on 9 in the autumn. That's a great attitude to have! There's also private tuition - you could control the amount of hours you teach and exactly when you do it How do you find doing an OU degree?
How do you find doing an OU degree?Yes I'd like to do private tuition, particularly with kids that are too poorly to go to school, or home educated kids.
I would never manage a brick uni, so the OU is a perfect solution. I'm revising for an exam at the moment which is taking it out of me quite a bit, so after this I'm not picking any more modules with exams. I haven't been studying 'full time' in the sense that I've been doing half the credits you'd do at a brick uni, but come September I'm going from 60 to 90 credits, so we shall see how that goes! I find studying tiring, but it hasn't been overwhelming (apart from this exam!)
What degree are you doing? I think I read that you're debating whether or not to go back to uni.....have you considered the OU?
Original post by xfirekittyx
I'd invest in some silicone earplugs. I'd speak to your uni, they may be able to put you in a quiet flat. Noise levels can be so different in the same residence in different flats. One of my biggest problems with noise was being right by the front door and kitchen... maybe ask to be away from these things? The rest of the noise issues will be down to people being considerate and unfortunately you can't really control that. The girl who lived above me was a DJ but she was so nice every time I asked her to turn it down. However, other people would talk loudly outside my room in the middle of the night after a night out and repeatedly slam doors >.<
Apart from actually, if that's a campus uni, you don't want a room outside a bar or the SU... I visited someone who was in a first floor flat and had a bar near his room and the loud music vibrated through it till 2am - that was in Reading, but the rooms facing the other side of the building, on the same floor, in the same flat, weren't affected by noise.
Apart from actually, if that's a campus uni, you don't want a room outside a bar or the SU... I visited someone who was in a first floor flat and had a bar near his room and the loud music vibrated through it till 2am - that was in Reading, but the rooms facing the other side of the building, on the same floor, in the same flat, weren't affected by noise.
Right, thanks for those tips, and to the previous posters who offered advice - bit brain foggy and generally exhausted to quote all
It's great to hear it come from people who can relate to me, rather than a general 'what is halls like' via healthy people, lol, if that makes sense!My uni emailed me saying halls are open for application now and reading through the requirements is says they give priority to those who are undergrads or postgrads that live 25+ miles away or those with disabilities in which there is substantial evidence for...? uhm, do you think they'd accept a letter from my GP? It won't say an actual diagnosis as I haven't been to see an M.E specialist yet(damn waiting lists on the NHS!!) but i'll get her to list the meds I'm on and how it affects me? I had a similar letter written which I sent to the Job Centre although I'm yet to receive any information regarding that(uhhh, job centres are annoying...whole other story though
)Anyway, I very much appreciate your advice so far
thank you x
Original post by modalsoul
Thanks for both of your replies. The thing I'm most worried about is noise in halls but then or a big student house. I'm okay with cooking although it would be nice to have others share the responsibility. I am planning on applying for the disability loan too but not sure if i would be entitled to it as I'm not diagnosed officially. I will be going to the university of Westminster harrow campus.
Hello
My name's Naomi and I've had M.E for 4 years, I'm also going to Westminster (Harrow) in September (hopefully, if I meet my offer!) and I'm really reaaally hoping to get accommodation on campus!!! I'm sending letters with my accommodation application from my consultant, nurse and gp, haha! Original post by n-a-o-m-i
Hello My name's Naomi and I've had M.E for 4 years, I'm also going to Westminster (Harrow) in September (hopefully, if I meet my offer!) and I'm really reaaally hoping to get accommodation on campus!!! I'm sending letters with my accommodation application from my consultant, nurse and gp, haha!
My name's Naomi and I've had M.E for 4 years, I'm also going to Westminster (Harrow) in September (hopefully, if I meet my offer!) and I'm really reaaally hoping to get accommodation on campus!!! I'm sending letters with my accommodation application from my consultant, nurse and gp, haha! Hey girls
good luck xOriginal post by xfirekittyx
I feel for you I think in my first year with M.E I put on a stone and a half. I think my body kind of went: tired food = energy so I ate a heck of a lot ontop of doing no exercise after the physio made me worse.
Generally the advice is start with anaerobic exercise, and do not overdo it. I don't know what you mean by 'can't really do much' - can you expand on that?
I think in my first year with M.E I put on a stone and a half. I think my body kind of went: tired food = energy so I ate a heck of a lot ontop of doing no exercise after the physio made me worse. Generally the advice is start with anaerobic exercise, and do not overdo it. I don't know what you mean by 'can't really do much' - can you expand on that?
Ah gosh thats exactly the same as me! I get tired and light headed and my mums like 'You need to eat something!' and im like noooo :')
Yeah ive been told to not do anything to hard. Well at the moment, i've been going into college only when ive had necessary lessons (meant to be in 8:30 - 3:30) and i can go out for maybe 5 hours maximum before it gets too much... but im really scared of putting the weight on and i know it will be harder to lose :l
Just wanted to post to give you guys a bit of a pisitive story :-) I was diagnoses with CFS in jan of 2012 (age 22) after suffering since I was 14. I was determined to have a baseline of 4 hours and high energy activities included showering and eating. So moderate CFS, not severe, but not mild either. I was a true boom and bust culprit. Got through my degree and masters by doing nothing all term then pushing myself to the brink at deadlines and then be really ill afterwards.
Im now manager of a coffee shop working 9/10hour days on my feet :-) CBT has beeb an absolute life changer for me, learning how to pace myself, kniw my limits and look after my body. Im still on heavy duty painkillers and have disrupted sleep and my brain fog can be pretty terrible at tines, but I couldnt have dreamt of this level of functioning a year ago. Kind of waiting for a massive crash but atm I'm doing well!
Not teying to rub it in people's faces but give you all a ray of hope :-)
Posted from TSR Mobile
Im now manager of a coffee shop working 9/10hour days on my feet :-) CBT has beeb an absolute life changer for me, learning how to pace myself, kniw my limits and look after my body. Im still on heavy duty painkillers and have disrupted sleep and my brain fog can be pretty terrible at tines, but I couldnt have dreamt of this level of functioning a year ago. Kind of waiting for a massive crash but atm I'm doing well!
Not teying to rub it in people's faces but give you all a ray of hope :-)
Posted from TSR Mobile
Original post by Quiet _One86
Hey girls good luck x
good luck xThank you
& Hi to Naomi who Is going to be on my actual course fingers crossed?
This is such a coincidence! I dunno if i'll be accepted for halls but i'll apply anyway.Original post by fredscarecrow
Just wanted to post to give you guys a bit of a pisitive story :-) I was diagnoses with CFS in jan of 2012 (age 22) after suffering since I was 14. I was determined to have a baseline of 4 hours and high energy activities included showering and eating. So moderate CFS, not severe, but not mild either. I was a true boom and bust culprit. Got through my degree and masters by doing nothing all term then pushing myself to the brink at deadlines and then be really ill afterwards.
Im now manager of a coffee shop working 9/10hour days on my feet :-) CBT has beeb an absolute life changer for me, learning how to pace myself, kniw my limits and look after my body. Im still on heavy duty painkillers and have disrupted sleep and my brain fog can be pretty terrible at tines, but I couldnt have dreamt of this level of functioning a year ago. Kind of waiting for a massive crash but atm I'm doing well!
Not teying to rub it in people's faces but give you all a ray of hope :-)
Posted from TSR Mobile
Im now manager of a coffee shop working 9/10hour days on my feet :-) CBT has beeb an absolute life changer for me, learning how to pace myself, kniw my limits and look after my body. Im still on heavy duty painkillers and have disrupted sleep and my brain fog can be pretty terrible at tines, but I couldnt have dreamt of this level of functioning a year ago. Kind of waiting for a massive crash but atm I'm doing well!
Not teying to rub it in people's faces but give you all a ray of hope :-)
Posted from TSR Mobile
Congrats on the progress! It can be difficult to know what to do with your body in terms of pacing and giving it what it needs when what it needs may not be always what it wants(allergies to healthy stuff...is a killer >.<) but yeah, it's good you've managed to learn how to cope like this, fingers crossed you won't crash any time soon!!
Original post by fredscarecrow
Just wanted to post to give you guys a bit of a pisitive story :-) I was diagnoses with CFS in jan of 2012 (age 22) after suffering since I was 14. I was determined to have a baseline of 4 hours and high energy activities included showering and eating. So moderate CFS, not severe, but not mild either. I was a true boom and bust culprit. Got through my degree and masters by doing nothing all term then pushing myself to the brink at deadlines and then be really ill afterwards.
Im now manager of a coffee shop working 9/10hour days on my feet :-) CBT has beeb an absolute life changer for me, learning how to pace myself, kniw my limits and look after my body. Im still on heavy duty painkillers and have disrupted sleep and my brain fog can be pretty terrible at tines, but I couldnt have dreamt of this level of functioning a year ago. Kind of waiting for a massive crash but atm I'm doing well!
Not teying to rub it in people's faces but give you all a ray of hope :-)
Posted from TSR Mobile
Im now manager of a coffee shop working 9/10hour days on my feet :-) CBT has beeb an absolute life changer for me, learning how to pace myself, kniw my limits and look after my body. Im still on heavy duty painkillers and have disrupted sleep and my brain fog can be pretty terrible at tines, but I couldnt have dreamt of this level of functioning a year ago. Kind of waiting for a massive crash but atm I'm doing well!
Not teying to rub it in people's faces but give you all a ray of hope :-)
Posted from TSR Mobile
Wow. That is honestly so good to hear! I'm the same as you....got it at 14 and I'm now 22....and I'm also a boom and bust culprit
What does 'a baseline of 4 hours' mean?
Original post by Lazuliblue
Wow. That is honestly so good to hear! I'm the same as you....got it at 14 and I'm now 22....and I'm also a boom and bust culprit
What does 'a baseline of 4 hours' mean?
What does 'a baseline of 4 hours' mean?
When I went to the specialist clinic in Bath they got me to fill in a timetable of how I spend my time. They then used that to determine my baseline. The baseline is the number of hours you can maintain on a good day and a bad day. Obviously really bad days you cant get out of bed or whatever but generally i could shower, eat 3 meals (albeit not make them) and sit up in bed to watch tv even on my worst days which they calculatsd at about 4 hours.
Posted from TSR Mobile
(edited 11 years ago)
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