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Really struggling at the moment

Posted , 7 users are following.

lisa16216
lisa16216

I have had ME for 2 years now, it just doesn't seem to get any easier. I'm better at pacing myself, recognising when I've had enough etc, but I am so fed up with feeling like this. I feel like half a person, and can't help thinking of who I was 2 years ago. Sitting at home by myself day after day is so isolating, but I don't have the energy to socialise, so what do I do ?  I feel trapped in a body that looks like mine, but isn't me. My GP has me on venal faxing and amatriptoline

1 like, 25 replies

25 Replies

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  • dawn97
    dawn97 lisa16216

    Posted

    Well I'm not sure there is anything positive about having me ?????  It's very hard to be positive about anything ? But on saying that  it doesn't help  thinking back all the time , the first thing you have to teach yourself is you ARE YOU BUT A DIFFERENT YOU !!!!! One that has many challenges ahead dealing with this illness but you ARE CAPABLE OF DEALING WITH IT !!! It just  means you take it day by day hour by hour , I know it sounds cheesey but it's true take your time try & think of things you can do not things you can't ! Be proud when you achieve something remember the energy it takes you to do something a " normal "!!!! Person would work a week to use up so when you do achieve something reward yourself because your a super human !!!!!!!!!!!  Try & make yourself smile & not to worry all day long wishing you all the very best luv dawn x
    • lisa16216
      lisa16216 dawn97

      Posted

      Thanks Dawn, just feeling very low today's we go on holiday next week, and I won't be able to do all the usual sightseeing, swimming etc that I usually do, and my husband and boys will be off doing all sorts of stuff that I would normally join in with and enjoy. I'm trying hard not to resent it, it's me that's I'll not them, but like I said earlier, it can be very lonely.
  • alison44235
    alison44235 lisa16216

    Posted

    What are venal faxing and amatriptloline? I don't take anything I find that is best for me. I don't like taking pills.

    Try amygdala re-training. Dr Ashok Gupta you can find him on the internet.

    I am really fed up with M.E. I have had it for 32 years. I hate the fact that people just do not understand the condition, even though I try to explain. I am quite angry about it at the moment.

    All the best. I am sure you will feel better soon or come to terms with it even though that is really hard.

    Alison

  • alison44235
    alison44235 lisa16216

    Posted

    Try amygdala re-traning. Dr ashok Gupta, you can find him on the internet. I hope this helps.
    • lisa16216
      lisa16216 alison44235

      Posted

      Hi Alison, I got spell checked ! It's venlafaxine - an anti - depressant, they both are actually.  Can you tell me more about the amygdala retraining ? 
    • alison44235
      alison44235 lisa16216

      Posted

      You will have to look it up for yourself.

      I will tell you what happened to me. I tried it last March 2013. Could only do it for around a month but It really helped then I did not have time to carry on with it as I had my daughters wedding dress to make and 11 waistcoats. When I did have time after the wedding I was frightened it would not work again. So I have not tried it since, but if you have the time to do it and have £100 I recommend you give it a go.

      P.S. I only did the first stage.

    • jackie00198
      jackie00198 alison44235

      Posted

      Alison:

      You made a wedding dress and 11 waistcoats? In my experience, that would be extremely high functioning! Was that a result of the amygdala re-training?

    • alison44235
      alison44235 jackie00198

      Posted

      You know I thnik it might have helped. I never thought of it like that before. I think was shear determination that kept me going, but I am still paying for it with extreme exhaustion and that was nearly a year ago.
  • sunshinemb
    sunshinemb lisa16216

    Posted

    Hi Lisa

    I am sorry to hear that you are having a hard time of it at the moment!

    It is ok for you to feel this way because fighting this illness is beyond exhausting both mentally and physically!

    Can I ask you how you think you developed the condition... was it a virus, infection, exposure to chemicals etc or something else?!

    Mine was a combination of chemical exposure, poisonous insect bite and fall from horse and landing on my head!!

    Because in some cases it may be possible to recover and in other cases it may not!

    Mind over matter is a powerful thing but with me/cfs it can work against you as you push yourself more and more to get better and your body does not keep up with your mind!

    I found that anti depressants made my condition worse and I was unable to function on any level. I came off all meds prescribed by NHS GP(whose hands are tied by how they are allowed to medically treat me/cfs patients).

    It took me many years to accept that my level of activity would be limited because I had been such a keen sports person, job that I absolutely loved and lost, own home, husband before I got this awful condition...don't have any of them now!

    The major problem is acceptance of where your body is at this moment in time and getting your head around that!  Being alone for long periods of time can drive even the healthiest person into a depression and it is not good for you and I had a major problem with this as I live alone.

    I started going for a coffee a couple of mornings a week to the nearest Mcdonalds, less than a mile away, so i could go thro the drive thru and then lie down in my car on their car park!

    Drink the coffee then go home and back to bed! That was over 2years ago. I now try and get there every other day just for the fresh air and more so chatting with the staff!

    We are on first name terms and have a great laugh...yeah I know!!!  But they are really good with me and see my car and have my drink ready for me...how nice is that?!!  Then within the hour I am back home and laid down again for most of the day while my body recovers from what seems like a marathon!!

    If someone had said to me in 2001 that this would be my life in 2014 I would have told them absolutely no way!

    We do not chose this life and we have me/cfs but it will not have us...if that makes sense!

    Take good care of yourself Lisa and you will feel better!

     

     

    • lisa16216
      lisa16216 sunshinemb

      Posted

      Hi, thanks for replying. I have no idea what caused my ME. 2 years ago, I had lost 2half stone in weight, was running, playing hockey and feeling better than I had in years. Went back to work in Sept ( I worked as a specialist support assistant, supporting children with autism) and within 3 days I was crawling up the stairs. That was it, I never worked again, and was finally medically retired in May 2012. Now I can't work, I can't play hockey ( I can't even stand for the duration of a hockey match and watch my sons play ) and have put most of the weight back on again. It's such a struggle sometimes, my family try to understand, but it's so hard to explain to them. I was already on a maintenance dose of anti depressants before the ME, but have gone from 37.5mg to 175mg daily, plus the amaltryptaline at 30mg daily ( max dose is 40mg I believe) . They do help, but as time goes on they help less, my GP doesn't seem to know what else to do for me. There are no specialist services in my area, and my local support group only seems interested in helping me to fill out claims for benefits. That's not what I want support with, I need to speak to someone who gets how I feel , and how you go about dealing with this bloody illness in the long term.
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