Really struggling to cope with CFS/ME :(

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Hi,

I'm after some advice really.

Bit of background info.

I had glandular fever in Sept 2014 and since then have had a gradual onset of various symptoms, constant fatigue, anxiety - resulting in panic attacks, confusion, brain fog, muscle aches, emotional instability, poor temp control, vertigo,... The list goes on - but you get the picture, basically I feel like a 90 year old with constant flu!

I'm 30 years old, have 2 children aged 12 and 5 and currently work 4 days a week after dropping a day due to not coping full time. Anyway, about 6 weeks ago after months and months of blood tests and various supplement treatments I was diagnosed with CFS/ME which has been confirmed by a specialist at the hospital.

Now, since then I have really struggled to accept the diagnosis and my limitations!

I have been trying to 'push through' the symptoms so I can fulfill my responsibilities at work and home but it's safe to say this is not working.

I work term-time only and have returned to work last week after xmas break, I've been back 3 days and feel like I've been hit by a train. By the time I get home and have managed to pull some kind of dinner together for the kids, I am exhausted, crying every evening because I just can't cope and then feel like I have no energy left to eat or even shower.

My husband works long days and I am literally dragging myself through until he gets home at about 6:30pm, he then has to take over pretty much so that I cane eat for 30 mins before having to get the children off to bed.. More and more he's even having to do this. I feel terribly depressed by the situation and have got to a point where I actually wish I wasn't here sad

I've even said to my hubby that he should take the kids and move out. As they'd be better off without me and my drama.

He's incredibly supportive and completely dismissed the idea, but I feel useless and I just don't know what to do anymore.

I've had 4 weeks off work since September and feel incredibly guilty about that too, basically I'm just constantly beating myself up and the symptoms seem to be getting much worse, I can barely get out to do the shopping and am spending all weekend at home trying to catch up, but that means the children are having to do the same.

I feel terrible about it all, does anyone have any advice as to how I can manage this better?

Sorry for the long post!

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  • Posted

    Sorry that should read that my husband takes over so I can rest* for 30 mins before the bedtime routine!
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  • Posted

    I don't want to have to say this Caz but have you considered having some time off work? You said your husband works so you have money coming in and, quite frankly if you keep on pushing yourself to the extreme that you are you could make your condition even worse.

    You need as much rest as you can get but in your demanding situation it's difficult, I know. It's even difficult to get enough rest for those of us who don't work and live alone because simply looking after ourselves i.e. eating, daily routine etc saps our energy.

    There are supplements you can take to help with your energy levels and fatigue, such as Co q10, D-Ribose, multiminerals, multivitamins, L-Carnitine, L-Glutamine, L Ornithine Alpha Ketoglutarate,Omega 3, 2,000mg vitamin C daily, preferably as a transdermal spray,

    It sounds like a lot but I'm taking a lot more than that! And it's helping a great deal. It's encouraging that you're young because the younger you are the better chance of recovery you have, or so I've read several times. I'll message you with a few tips.

     

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    • Posted

      Thankyou Georgia,

      I'll have a look into that information, and the supplements.

      I hate taking time off work, I really do love my job, but I'm just not able to keep up with the demands of work, looking after the kids and the house.

      I think I may need to rethink about this though, because as you said the severity of the symptoms have indeed got worse, I am currently struggling to be out of the house for more than an hour or so and then paying for it when I get home!

      Thanks again you've given me some things to consider and it's good to know that there is at least some hope smile

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  • Posted

    Hi Caz,

    I really empathize with you. I've experienced pretty much the same physical and emotional symptoms over the past few months. I do think you should seriously consider some time off but I'd also urge you to think about telling your line manager about your diagnosis. Once you do this you are protected by the Equality Act and are entitled to reasonable adjustments. I'm a teacher and recently diagnosed and was amazed at the amount of support available if you know where to look for it. I've found Access to Work really useful. They can provide a mental health workplace support service as well as funding for a support worker or any equipment you may need. I've also signed up for courses with MIND and asked to be referred to Cognitive Behaviour Therapy via my GP. Many local authorities have specialist ME / CFS services which you can be referred to by your GP - though you may need to google what's available in your area as GPS aren't always aware of these. Through these specialty services you can get advice on things like pacing. For example in Hertfordshire we can have support from Occupational Health nurses, psychologists and physiotherapists on a personalized 1:1 program. If available, I'd also recommend asking for a referral to your company's Occupational Health scheme. If not available, you can also access Occupational Health via the government's new free service. You can refer yourself to this if you have been or are likely to be off work for more than 4 weeks. OH will suggest things to help you manage better at work.

    I hope this helps!

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    • Posted

      Hi Teacher,

      Thanks so much for your reply, it does help to know there are others in the same situation.

      I have self referred to CBT and had the initial assessment so just waiting to hear back.

      I also work in a school as an HLTA and the headteacher and HR are aware of my diagnosis, and they are very supportive, thankfully I've been at this school for 8 years so they have witnessed my decline so to speak. I have asked to be referred to OH and am also waiting on that.

      ... Lots of waiting but I am trying to put things in place!

      I am also lucky enough to have specialist CFS/ME services similar to yours here in Bristol, which is where the diagnosis was confirmed.

      It's only been a few weeks though and having had the xmas period since then, I just haven't had any further info as yet on further support/services, but I have an upcoming review with my GP so will hopefully be able to arrange this then.

      I've read about pacing but haven't had any advice on how to do it yet, but I do intend to ask. It's just going to be difficult to practice with my current schedule!

      I know I need to take time off, but this does not bode well with my anxiety as I just feel awful about it. I need to learn to be kind to myself I guess and listen to my body.

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    • Posted

      Unfortunately, these referrals do take time which is frustrating. Sounds like you are on the right track though. I'm struggling to manage the anxiety too and have found that hypnotherapy cds / downloads can really help. I'm not sure about long term benefits but they are way more effective than a glass of wine in the short term! Has your GP talked to you about medication at all? I know some people are very anti them but I've found pregabalin and amitriptyline really good for reducing anxiety and helping me to sleep better. I'm also exploring aromatherapy, meditation and supplements and finding some benefits there. I think sometimes it's a combination of little changes that can together make a big difference. Wishing you all the best, going forward! xx

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    • Posted

      Thanks again for your reply.

      I've no doubt it will take some time .. It has taken nearly 2 years to get a diagnosis!

      It's been a long process of elimination because I also have deficiency in Vit D, vit B12 and iron so had to take courses of the relevant supplements to outrule those as a cause but symptoms unfortunately remained.

      I am a bit dubious of medications, my mother is disabled she has COPD and severe depression and has had many complications from side effects to drugs. However I have a friend that's a Naturopath so have booked an appointment with her to gain some further insight and advice hopefully!

      Though I am open to reconsideration is this fails.

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    • Posted

      My doctor gave me amitriptyline but I couldn't use it because it made me even more tired in the day time. Glad you're finding it helpful though. I take Valerian at night because it gives me a good night's sleep so I'm better in the day time.

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  • Posted

    Hi Caz sorry to hear your having such a hard time . I totally understand where your coming from . I've had me/cfs for nearly 10 years now . Past 3being the worse. I took glandular fever too . I listened to people saying push though it don't lie down to it . Worse advice I was ever given !!! Came from people that knew nothing about me/cfs . I had 2jobs and was very independent . Looking after 2 kids on my own . I now am a shadow of the person I was . If I can give you any advice it would be to slow down and pace yourself . Pushing through never helped me at all . I am totally burnt out , and what's worse than having me/cfs is I have no support or guidance   . I hope that your family and friends support you. I think that is important . I wish you well and hope things improve for you . I believe if you have the proper advice and guidance at the start you have a better chance of recovery  .  X

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    • Posted

      Hi Lorraine,

      Thankyou for your reply, I'm also sorry to hear you're feeling so rubbish, this illness is not an easy one to live with!

      It's taken a long time to get to the root of the problem and I for a while have just thought that perhaps I wasn't coping aswell as 'normal' people do and have had similar responses from friends and colleagues

      " we all have days like that"

      "You just need to get on with it!" Etc etc 😡

      I have an amazing husband and best friend and very understanding kids thankfully. But I also have to support my mum who is disabled due to COPD so that's as far as my support network goes for now but I'm extremely grateful for these few!

      Deep down I know I'm doing to much and this is a personal battle I guess I have to manage.

      I am considering visiting the GP in regards to time off work or even altered hours so that I have an opportunity to practice pacing, which at the moment is near on impossible.

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  • Posted

    Hi Caz,

    So sorry to hear that you are having such a hard time managing CFS!  I agree with some of the others that suggested that you need to find a way to take more time off from work and to pace yourself. 

    I've had CFS since I was 30 years old and I'm 55 years old now. It's been a struggle keeping up with daily demands, but I'm lucky to have a very supportive husband who helps out a lot. 

    I, too, have anxiety about not being able to do all the things that I was once able to do. For the past 15 years, I have worked as a part-time teacher in a multi-aged classroom. Working part time kept me involved and engaged; yet it allowed me enough down time to rest so that I could meet the other demands in life such as raising our daughter and spending qualitiy time with friends and family. 

    Since I turned 52, my energy levels have decreased even more, and I find it very difficult to keep up with even a part-time job. 

    I do find light to moderate aerobic exercise helps me, as it helps reduce stress and helps me feel a bit energized. I also find that a low dosage anti-depressant (doxepin) before bedtime helps me sleep better. I've tried some supplements over the years, but I did not find any really helped. 

    Anyway, I hope you can find a way to take more time off of work, so that you can save up as much energy needed to enjoy your young children. I did not work when my daughter was very young, by the way. I spent the days enjoying her.

    Hope this helps some and you can find a way to better manage CFS. Take care! KPD

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    • Posted

      Thanks KPD,

      I feel awful considering asking the GP to sign me off, but I really don't want to give up on work, as you said it keeps me slightly sane having some form of routine and adult interaction.

      However I do feel perhaps I need some proper time to recover and discover my limitations.

      I have considered changing my contracted hours as I don't want to take the mick out of my employer, as I certainly don't expect them to pay me for hours I can't achieve or long term sickness but until I know where my limitations lie I don't think this will necessarily be helpful, ie no point dropping a day and going down to a 3 day week and then discovering that I can't manage a full day, and then having to make alterations again!

      If I just had to get through my working day, I could probably manage that if I could come home and for example take a nap after work.

      It's the morning prep to get out of the house, do 2 school drop offs then get myself to work and having to come home after work and carry on, to look after the children and the house that's the challenge. It makes it a long day!

      I am really grateful for all the replies and advice here though, for the 1st time in a number of weeks I feel a little (dare I say!) hopeful smile

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  • Posted

    So sorry to hear you're struggling. For of all, just know that you're not alone. I think most people with ME/CFS have a difficult time knowing limitations, feeling totally depleted, deciding whether they can work, and dealing with depression and anxiety because their life has been so severely affected. So, in other words, what you're feeling is totally normal, given such a difficult situation. My biggest piece of advice to you would be to stop trying to push through the fatigue. This can greatly impact your long-term prognosis, and get in the way of a recovery. The first 3 or so years of ME/CFS is the window where many people actually can recover, and you're jeopardizing that chance by going outside of your energy envelope. You should pace yourself and stay within your energy limitations. The fact that you have a supportive husband is a very positive thing. If he can pick up the slack, that can help you get better. You're doing the best you can, so please stop beating yourself up. I know this is easier said than done. We all want to be productive members of society. But some things are beyond our control. Because of all these issues and my own difficulty dealing with this horrible illness, I decided to start meditating, just as a coping mechanism. I took a free, six-week course online, sponsored by the University of Massachusetts Medical Center. This was strictly a secular course. It has helped me immensely with anxiety and depression. I urge you to find some coping strategy and way to de-stress, whether it be meditation, talking to a counselor who understands, listening to music, whatever.  And remember, there are people in your life who love you and care about you. 

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    • Posted

      Thankyou Jackie,

      My husband is great, he has been having to pick up the slack more and more lately 😕

      I have tried meditation, I downloaded an app but because of my schedule I haven't been able to consistently find the time to do it.

      Being kind to myself is one of the greatest challenges I find, it's so easy to get caught in that negative cycle.

      I wasn't aware of the 3 year window thing so that's definately food for thought.

      I have been researching whether this gets progressively worse recently due to the exacerbation of symptoms so that helps shed some light.

      Thankyou, I have lots of things to consider but this is all very helpful smile

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    • Posted

      I know a couple of people who recovered after 10 years and someone else, I think from our local ME group, told me that 10 years seems to be a point of recovery for a lot of people. 

      I've had it for 10 years and I'm improving at a faster rate now than I have previously. I'm just saying that there's still hope for those of us who have it for longer.

      It's great that you meditate! I'd love to do that but my brain races so much that I find it difficult.

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