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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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Don't know what to do...?

Discussion in 'Finances, Work, and Disability' started by flamingo, Aug 2, 2010.

  1. flamingo

    flamingo

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    Leeds, UK
    Hi all,

    Sorry to barge in and demand attention as soon as I have registered, I just really need thoughts and advice from those who understand what I am going through. I am a possible ME/CFS sufferer (awaiting hospital appointments for further test, prods and pokes for confirmation but doctor suspects ME/CFS and I'm pretty certain myself!) and I am at a loss as to what to do at the moment.

    The problem is my health has been slowly deteriorating over the last couple of months (probably longer but recently has been more noticable). On work days I have litterally been staying in bed until I absolutley have to get up (which is usually about 12pm - I start work at 2.15pm), then I go to work and struggle through the 4 hour shift and get home exhausted, most days unable to stand anymore due to muscle fatigue and on really bad days unable to use my arms. Then for the rest of the evening I just about manage to get some dinner and then go to bed. And then the next day the same thing all over again. I spend the weekends trying to catch up chores that I haven't been able to do during the week but this invariably tires me out. And do the same thing all over again the next week.

    That was until last Wednesday when my body just gave up on me. I felt horrendous all day - feverish, flu like symptoms, couldn't stand the light, migraines, couldn't even get out of bed to get food or drink. Was off sick for the rest of the week and felt slightly better towards the end but not by anymeans able to go back to work. The weekend I have spent trying to catch up chores but have just tired myself out again. And then my boyfriend wanted me to help him with a job application at about 10.30pm last night (a little too much to ask, right?)

    I haven't go the energy to go back today - im exhausted, dizzy, sickly, headachy, can't stand up for more than a couple of minutes, mental functioning is rubbish (not going to work out too well because I'm a cashier). The problem is I can't afford and more time off work and my boyfriend thinks I should go back now, again cos we need the money. I know if I go today I am going to be off sick for the rest of the week...I'm just so confused. I don't know what to do. The thought of having to go to work whilst feeling like this is making me feel stressed out and I'm sure that is just exacerbating the symptoms.

    Should I go to the doctors and get a sick note so I can be officially signed off work? The last time the doctor saw me was just before I started to deteriorate so rappidly and so he hasn't seen me this ill. I just don't know what to do...I feel like I'm letting everyone down, constantly have feelings of guilt because I'm not doing all the things I should be, and I'm sure my boyfriend is starting to get fed up of the same old illness/tiredness thing every day. I don't think anyone understands just how ill I feel. I'm at a loss at what to do.
  2. Esther12

    Esther12 Senior Member

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    Sorry to hear you feeling so rough. I'm not sure I have much useful advice.

    It's really not fair for you to be feeling so guilty about this though. You go easy on yourself nad treat yourself with the sort of respect you'd expect from others. If someone else told you they thought you should feel guilt then you would think they were being an arse - and you'd be right.

    It's generally thought to be best if you manage your activity so that you're doing the same ammount every day, and to ensure that this level of activity does not leave you feeling especially tired the next day. It sounds like you're really having to push yourself too much at the moment - are there any tasks you can let go of, and spend that time relaxing instead? Have you tried something like meditation?

    I'm sure it's confusing for him too, but it sounds like your boy-friend could be more supportive. Could he help with the chores you need to catch up with at the week-end so you don't have them hanging over you during the week? CFS can be a diffciult illness for others to understand, so don't go to hard on him, but it would be worth trying to explain that you might need some extra help while you're feeling ill.

    I always feel uncomfortable giving advice, as I'm still ill so clearly don't know how to get better! My tentative suggestion would be that you try to cut out any superflous complications in your life, and spend more time relaxing instead. Hopefully that will then leave you better able to manage the tasks you need to do without getting ever more worn down. Easier said than done I know.

    One common mistake (and one that I made) is a stubborn refusal to accept how differently you need to think about the way you use your energy. It's unnatural to have to plan in advance what you want to do and when you'll be able to rest, but it seems like that is the best approach to take. Really try to see managing your exertion levels as your number one priority, over and abover your other desires. It seems that a lot of people have CFS type symptoms for a brief bit, and are then able to recover fairly rapidly. Hopefully that will be the case for you.

    Good luck.
  3. Sasha

    Sasha Fine, thank you

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    UK
    I'm sorry you're feeling so awful, Flamingo. I don't see what choice you have but to get signed off sick - you're clearly not capable of working without making yourself worse. I think you are struggling with the guilt that we all feel when this happens. It's natural to feel guilty but you can't help being ill and it's not your fault. It's important for you to recognise how sick you are and to rest now so that you have a better chance of eventual recovery.

    If you are too ill to visit your doctor to get a sick note (and it certainly sounds to me as though that's the case), don't struggle to get there. Phone the surgery, explain that you're very ill at home, say that you're happy to speak to the doctor on the phone to describe your symptoms and have a home visit from him if he thinks it necessary and ask for the sick note to be mailed to you (they may want you to mail them an SAE; this is the NHS!).

    Your boyfriend and others will just have to face the reality of your illness. You don't have the luxury of pretending it's not there and nor do they.

    Good luck! I'm sorry you feel so awful and I really hope you see some improvement soon. But it's going to take proper rest!

    At the risk of sounding like a problem-page auntie, I wonder if it would be a good idea to show your boyfriend this thread? I think those of us with CFS often try to hide how bad things really are from our loved ones for fear of scaring or distressing them and that can make it harder for them to understand.
  4. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Hi flamigo,

    sorry to hear about the situation you are in. I hope you ended up getting more time off work.

    I know you are going to hate to hear this but to me its looking like it would be in your best interests to see if you can have your work cut back to 2 hrs per day.. or better still .. have a week or two off to recover more and build up a bit, then go back to work at 2hrs per day rather then 4 hrs. During what you are currently doing and going downhill like you are, will only end up leading to a HUGE CRASH and possible be much much worst then you are now for a very long time!! so its time to change your situation NOW rather then later.

    You need to take the reins of the situation now and do something about it now.. rather then wait till you are even in a worst place and able to do even less.

    Be realistic and be aware that you probably may need to go onto disability payments. Most of us do need to do that. Dont try to hide how truely sick you are and end up making yourself worst. You need to be able to have compete rest days with this illness if you have any hope of slowly getting better and should at least have a couple of days like that at your disposal per week. (not days where you are having to work hard to catch up on housework).

    Your boyfriend currently hasnt got a good understanding at all of this illness.. and needs to understand how serious it is. He should be doing the housework for you if he wishes you to be able to continue working at all. Or you need to be getting a housecleaner in to do it instead.

    ps.. how are you right now?
  5. Rafael

    Rafael XMRV+ Member

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    Ontario, Canada
    I agree totally with the advice your getting. I just wanted to add a few of things in case you do get your boyfriend to read the thread.

    1) I was lucky that my wife stuck with me through the worst of this. It was quite an unplanned test of a relationship. But we ended up with something much deeper.

    2) Finding a sustainable "bottom" ASAP is key. A level of activity that can be maintained that does not lead to increased symptoms, Post-exertion Malaise, the next day.
    This level is probably lower than you or anyone you know wants it to be. But if you can find that ...you will also find a safe amount of energy each day to start working up from.
    Priority of available energy is to healing/rest, second to very measured & light, maintaining / building of muscle tissue, then spending a compartmentalized amount of time working with doctors and addressing your particular drains of energy. all this definitely before socializing or mental exertion (like work or following ME forum news to excess like me).
    Note: Some very good doctors believe with ME your ADP/ATP energy cycle - the mitochondria - are almost certainly less than 100% efficient .... so if you have weak "battery packs" then at least you want to have as many of them as possible, and that means muscle tissue)
    Here's one energy management metaphor written by my specialist - I re-read it shortly before my "bottom" - and it frightened me sufficiently to finally accept energy conservation completely into my life.

    "The Glass Box Image: Visualize yourself completely enclosed in a glass box. If you listen to your body, you can learn the limits of your box and stay within it. As a result your glass box will gradually expand, and allow a few more activities. You will have cycles of good and bad days but stay within the limits of your energy box. If you have a good day and use up all of the energy and push yourself to do more (as you used to do when you were well), you will smash through the glass and (metaphorically) bleed all over the floor. The glass box will shrink to a much smaller size than before. You will have "crashed". You will have no energy to heal your illness, all the energy will be tied up in trying to recover from this most recent crash. Unfortunately I have seen patients continue to push and crash until they have become bedridden and... " (you get the picture.... and I got the picture when it was me and I had to swallow a lot of denial and make a decision)

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