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I am new to posting on here, a friend suggested that I should try and find a forum to speak to people going through a similar thing to hopefully find some comfort. Really hope that this will ease the mysery I am currently experiencing.
Over the past 12 months I have had glandular fever, recurrent tonsilitis, B12 and folate anaemia and have undergone a tonsillectomy. I had hoped that the tonsillectomy, B12 injections and folate tablets along with the various other vitamins and supplements I have tried would mean i'd be feeling normal again by now. I have been diagnosed with post viral fatigue syndrome and I am currently signed off work again. I am finding it incredibly diffuclt to deal with, I'm constantly frustrated that I cannot do the things I want to be doing and I am feeling increasingly lonely and isolated the longer I'm off work attempting to rest. I'm suffering with this horrible horrible fatigue unlike anything I have ever experienced before- my eyes never feel fully awake, my brain feels clouded like I have so much going on in it but I can't make sense of any of it because I don't have the energy to attempt to think straight, I feel like i'm constantly shuffling around unaware of what is going on around me because i'm just too tired to take notice and concentrate on anything. Being in work has been especially difficult, there have been times were the fatigue has made me feel so dizzy that I felt like I was going to faint and have had to sit in the toilets with my eyes closed and head in my hands. It's this indescribable feeling of not being able to function but also not being able to sleep, just sitting here in limbo wondering what the point is. My arms and legs feel so heavy as though weights are tied to them and whenever I feel this fatigue they ache as though i've ran a marathon carrying weights. I think the stress of having to be off work and feeling like I'm letting people down combined with the fear that I'll never be able to function properly again is probably making my symptoms worse, any suggestions on how to deal with the feeling of frustration/fear would be really appreciated. I'm starting to feel a bit resentful or envious of others who can go about their daily tasks, however mundane or menial they may seem to them, without this constant fatigue and brain fog. I feel like I really took for granted all of the time I spent doing things and being fully there, alert and awake. Now everything I do is a constant blur, unable to even hold conversation fully because I'm just too drained. After a day at work walking to the bus stop five minutes down the road feels literally impossible, like I'm trudging through mud up to my neck, every part of me aches, my whole body feels completely depleted of any energy and I also look very pale and rundown. I constantly have ulcers in my mouth, swollen glands and a sore throat despite having a tonsillectomy in July.
I'm 23 and I am trying everything I can possibly imagine/have read about to try and get better. Every day I'm taking a multi vitamin with iron, cod liver oil, Co enzyme Q10, L Carnitine, D Ribose, Magnesium, Vitamin C, Vitamin B Complex, Manuka Honey, Organic apple cider vinegar, a probiotic and my diet is the best it has ever been - lots of lean meats, fruit and vegetables and a measured amount of dairy and wholemeal produce. I no longer drink alcohol as I end up really run down and ill after a night out and I don't smoke. I don't drink fizzy drinks so my drinks throughout the day consist of water and herbal teas. I have tried having more sleep at night, less sleep at night, sleeping in the day, not sleeping in the day, resting when I need to, pushing myself and resting only at the end of the day. I have tried all of these in measured periods of time to see if any of it makes a difference. I have tried a sort of graded exerice were I walk for ten minutes one day and increase to maybe 15 the next day. I have tried mindfulness meditation and various relaxation techniques which I find help at the time but can't see much lasting impact. I have tried various bath soaks etc to try and help the aching none of which seem to help. I have tried pacing in the sense that I'll get a shower and then rest and then do something else little and then rest, and this doesn't seem to have helped but I'm unsure if i'm doing this right.
I would be really really grateful if anyone could get back to me and share how they feel day to day and how they cope with it and the feelings of frustration. At the moment I'm also pretty sure this is going to cost me my job, how have other people managed this illness with work? It's so difficult trying to explain to people how I can get up and shower, and this will then completely wipe me out for the day. I'm so scared that people think this is laziness and I know they don't understand, especially my employer. I was never ever like this before having glandular fever, I finished University and went travelling and have always had a really normal level of energy that allowed me to do everything I wanted, but I have spent the past 12 months feeling completely usless and fearful of the future. So any advice anyone can provide would really help.
Thanks! (Sorry for such a long post, felt like it helped a little typing it all out)
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a few key points/suggestions:
1)PACING yourself is SOOOOOOOOOOO important & particularly so in the early stages.
2)sleep is also SOOOOOOOOOOOOOO important - a least 9 hrs & as much as possible before midnight.
3)the food you seem to have sorted
4)the specific vitamin routine you're on helped me. however, when i added b12 sub. cut. my symptoms improved measurably. unfortunately, i developed an auto immune response to the b12, so had to stop. auto -immune conditions are common with ppl with ME/CFS. however, v. few develope an auto-immune response to b12. i would strongly suggest that you have your b12 & Folate levels checked by your GP. i'm convinced that my ME/CFS occured coz of low levels of 12 which leaves one succeptible to immune compromise, infections etc. etc. do read up on b12. the Pernicous Anaemia Society website is excellent. the 'healthunlocked' website in the PAS section offers indepth, reliable information and they RE SOOOOOOOOOO knowledgeable and supportive.
5)Do look up support groups in your area. Action for ME give a list.
6)find the nearest ME/CFS mangement course in your area. it helps & you'll meet other ppl like u.
7)have a look on the work of the ''ME RESEARCH UK'' - they have an excelent magazine called 'Breakthrough' - they collate ME/CFS research from around the world. there's also the ME Association.
8)i'm much better than i was in the begining and i'm better at managing it now too. so hopefully things will get better for yiou in time.
meantime, look after yourself.
Thank you so much for replying. I'm looking into everything you've mentioned now. Can I ask, when you say pacing is it just a case of doing something small and resting for half an hour and so on? Also, how do you tend to rest? I know this may seem silly but as I'm not feeling the benefit of any rest periods I don't know whether I should be trying to sleep or lying down in silence or sitting watching something etc?
it's difficult to explain ''Pacing'' in a nutshell. however, this is a bit from the Action For Me website that makes it understandable:
''Think of your available energy as being like a mobile phone battery.
If you completely drain the battery you have to wait for it to recharge before you can use the phone again.
If you use some of the battery and make regular top ups, then your phone will always be ready for use.
Managing your energy through planned periods of activity and rest will mean you are more likely to be able to do the activities you want to do''
however, it's not ALL that simple. you'll need to get a ''baseline'' of the energy available to you on both ''good'' & ''bad'' days. then you'll have to work out how much there is available for use on each day/s. for me that helped the ''boom'' n ''bust'' pattern that had me over spending on ''good'' days & having to spend weeks in bed as payback.
Amber, do have a look @ the ''Pacing'' section in the ''Action For ME'' website. it explains it in 'bite size' portions that are manageable.
also, as a veteran (that can't bear being grounded) i feel it's IMPERATIVE that you find a way of ''accepting'', that right now, you're body has problems and you need to give it time to recover. this is illness IS NOT in your head. as soon as you accept that, others will too. pls don't allow guilt/shame or any of those emotions get a hold of you coz they can destroy u. try to remain positive as possible when u can. and know that coz your young, you have a v. good chance of recovery, but you'll have to work with the illness & not against it by over taxing your body/mind.
pls be kind to yourself.
and besides some people do take a very long time to recover from glandular fever, I would hope your work would know better than that.
The good news for you (not that any of this is good) is that whilst a year sounds and must feel like an extremely long time to be ill, you are in the early stages, so there is still every chance of a full recovery for you, please don't give up hope. Cry when you need to cry, rest when you need to rest (easier said than done sometimes I know) and rant at a friend when they let you.
I used to get the feeling of being exhausted after just getting up and having a shower to the point where I couldn't even dry my hair (if i'd had the energy to wash it in the first place of course!), just had to go straight back to bed (well at the weekends when I could - I used to go into work looking and feeling like a zombie), so I'm living proof that things can change for the better, although I am not fixed. Whilst I still feel tired a lot of the time, I have stints where I can do more with less payback.
One of my biggest problems is feeling so "wired tired" that I can't sleep, I don't suffer with anxiety and i'm not worried about anything in particular but my mind just races at night when I'm trying to sleep about the most random and irrelevant stuff, which just coumpounds things.
Have you discussed with your doctor the possbility of mediciation to help you sleep? I was trialled on citalopram previously and didn't get on with it, it put me off for a while, but I am now trying Amitriptyline and just yesterday and today I've started to feel a bit better, I seem to be doing a few more chores with a bit less resting and some of the joint pains I was getting have gone (probably just because I am actually sleeping now) I still get the random shooting and weird pains but even they don't appear as bad as before. It's still early days though so I can't rave about the medication just yet, i've been taking them for just over a week, its taken me that long to get used to them, they made be feel worse at first and didnt think I could bear them for much longer but am feeling more positively towards them now, but have to cut them in half as the lowest dose of 10mg is way too much for me.
If you feel like this is a shorter term problem perhaps sleeping tablets may help, i've found Zimovane useful in the past, it might be worth asking your doctor about them. I know it may not sound ideal relying on medication, but your body won't be able to heal itself properly if you are not sleeping well.
It seems like you are doing everything else you possibly can to help yourself and it does sound like you have been through a lot this year, having glandular fever and an operation, you may well find that your poor body just needs a bit more time to recover from it all, I know it must seem like its never going to happen, but its still early days and its still extremely hopeful for you, so while you are off work take the time to rest as much as you can, don't try and do things just because you think you should, there is plenty of time for that when you get back to work.
There is some great support and lovely people on this forum, so well done to your friend for recommending you come on here
Thank you for your advice. It really is helpful to hear from people who completely understand what I'm saying. A lot of my friends and family have told me not to worry what my employers think and not to be made to feel guilty, but I feel like they don't truly understand what's going on in my head because of all this and it sounds like you really get it. Did you continue to work whilst you felt like this? I'm so conscious of the time I'm having off work but fearful that working too much when I feel like this will only prolong things.
I am back at the doctors on Monday so will speak to her about sleeping tablets etc as you mentioned.
Thanks again! X
It is horrible trying to struggle on when you really feel that you can't and know that you shouldn't but what else can you do but keep trying? Well, I pushed myself on and on until like you i ended up keep going sick from work and unable to do anything else much either. As Caitlin mentioned in her reply, just getting showered exhausts me too and I have to rest, wet, in my towel before I can cope with getting dressed and then have to lay on the sofa to recover from that. I have returned to work, doing just 7 hours over 2 (non consecutive) days but am pushing myself even now and resting as much as I can in between. I am far from better but probably better-er than I was when trying to work longer hours. I suppose what I mean is; is there any chance that you could try and reduce your hours? My Dr is supporting me with a 'fit note' that says I may be fit for work on reduced hours. Perhaps your's could do the same for you.
Hope you start feeling better soon.
My employers really aren't keen to understand or make adjustments, when I last spoke to them they told me I would feel better if I just 'got up and got out' and told me that I'm unreliable and that my colleagues are frustrated with me whilst I was in tears in the phone My HR manager is actually keen to increase my hours despite me explaining my current situation. At the moment I'm relying on the understanding of my doctors to keep me signed off, but will speak to them about making a recommendation that I reduce my hours and see how that goes.
Thanks again! X
''You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities''.
your place of work is obliged to make adjustments to facilitate & optimise your work potential.
i know how DIFFICULT it is to fight for one's rights with this debilitating condition, cos a lot of the time there's just enough energy available to keep one's head above water. however, if u can get to a CAB, they'll be able to advise on your rights and may even liase with your place of work. if you're unable to make it to a CAB information point, some CAB's have a home visiting system in place.
i'm wondering if your parents, boyfriend, colleagues etc. would be able to help you. my heart goes out to u in this very difficult place.
try to get someone to help share this load wiht you.
Take care of yourself and good luck.
I know how hard It must feel right now to be signed off sick but, this seems the best course of action as you're describing just how exhausted you are on here. don't rush to get back to work, you are recovering right now and need that time to heal. when you have a little energy, get In touch with the CAB and explain your situation, your diagnosis and ask about what concerns you regarding work and/or benefits. Take someone with you, it helps me as my memory is often shot with this condition.
I'll also add that as well as the physical rest, mental rest is also important. play gentle music and try not to focus too much on the future right now. Focus on being good to yourself. I spend time resting prior to doing things now as well as having to because I have done too much, like you, and most on here, I was pretty active prior to this so, find it hard sometimes.
Remember, your body is trying to recover, it just takes time.
Hope this helps
I, too, really got worse after catching "what the drs/specialists thought was akin to Glandular Fever 10 years ago", and since then it has been a "trial and see" situation (also probably because it is only over the last few years that Doctors etc are starting to recognize CFS, and not just "a yuppy flu"....)..............if you feel that you need validation for yourself, which is a lot of us have needed to do, is to talk to a Psychologist/counsellor who understands CFS, and they will help you to "learn ways of staying positive"....................take care and keep in contact...........Bron
Thank you for your reply!
I have actually read about melatonin and was looking into buying it. I was unsure where to buy it from as the more well known places like Holland and Barrett didn't seem to stock it. Could you please give me any advice on where I can buy it from a reputable source?
Thank you xx
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