Is this it for the rest of my life

Posted , 9 users are following.

I've come on here for a good moan today as I feel so bad.

after 11 months of waiting for my PIP appointment it final arrived and I went on Monday. It took an hour going over the same questions .

what can you do ....what can you not do .....medication and so on.

since then I have been in bed, I went to bed at 6pm mon and woke 2pm tues and have been in bed since.

i am so washed out I can not stop going to the loo,my tummy is empty I have not had any thing to eat since Sunday.

I am sitting in bed writing this my wonderful husband is at work and I suddenly realised that I have no one to call to talk to as all friends seem to have disappeared .my children have all moved away with the forces and I do not like to burden them.

so is this it from now on sleeping taking pills and feeling lonely I have had  

M E for 3 years and it does not seem to give me accasional good days.

I am 54

thank you for letting me moan.


0 likes, 14 replies

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14 Replies

  • Posted

    Hi Debs

    I know exactly how you feel!

    I find it so hard to cope somedays, I don't see anybody from one day to the next and then my poor hospital gets the brunt of it when he comes home

    Have you tried Facebook, there are quite a few forums with like minded people. And try

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    • Posted

      Hi Brenda

      i was an avid face book user but I think people got fed up with me.

      what I don't understand is the medication that I take makes no difference, if it did all well and good  but it does not seem to make your life any better.

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  • Posted

    It's good to let it all out at times.  Sounds like you need some friends and a reason to fight the symptoms and get out of bed.  Any chance of some voluntary work which you could manage on good / goodish days but cancel on bad days?  The getting out and meeting people would do you the world of good.  A reason to smile and think of something else for a while would be brilliant.  You've unfortunately not got enough stuff to distract you from the pain.

    I have kids to get ready for school and take there so I have to get out of bed in the morning - no choice.  Although it's hard and I always need to recover after the school drop it does get me out of bed.  It also gets me thinking about their needs so it can distract me from the pain.

    I do voluntary help at Brownies once a week.  It helps me socialise but if I'm not well enough I call call them and say I can't go this week.

    We have a Fibro / ME group that meets once a month locally for a chat and cuppa.  That's good to get to for advice and seeing how others are coping.

    Whether it's for life no-one can tell you.  It comes suddenly, it can go suddenly or slowly.  Sleeping to a certain amount is needed (when you've got over the stress of the PIP interview you'll be able to cut that back a bit hopefully).  Lots of sleep will make you want more not the other way around I found out.  Pills are there to help us with the pain and syptoms.  It's up to you if you want to keep taking them but if they are helping it makes sense to keep taking them.  Feeling lonely - that's something you definately need to address.  Establish what you can manage / what you want to do in regards to what you can manage and then go out there and meet new people.  You need it, you need to push yourself just enough that you can stop feeling so lonely.  Good Luck x

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    • Posted

      Thank you Julie, I no I sound like a stick in the mud but I live in the sticks and unless I drive which I don't I'm stuck. I did ask my doc about a me club to get out but it is 46 miles to the closest.

      cheers for your advise

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    • Posted

      46miles is a long way! sounds like you are going to have to make friends using the internet.  Try to find an internet club with likeminded people ie, animals or sewing that kind of stuff.  Having people like us who understand your physical problems is needed but having people who can distract you is also needed.

      Another bigger thought is moving house so you are not so isolated.  I know it's a big thing and will be stressful during the process.  However, it you become more accessable to other people and activities your emotions would be so much improved.  This would then benefit both yourself and your husband.  Being so isolated isn't healthy when your not flexible to drive everywhere.  Good luck

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  • Posted

    Hi deb , you moan anytime it's good to say what you've been holding in for so long ! Sadly you could have been writting my story & the story of so many of us ! 

    Im 52 started with fibromyalgia 14 yrs ago & have recently been diagnosed with me also & when you said all my friends have dissapererd it broke my heart because you are so right we get left on our own to cope ! It's really hard on our husbands what they go through is harder in away because they have to keep us going & whatching us so unhappy is heartbreaking for them ! I went on a chronic pain management coarse 8 yrs ago & still have a lunch from time to time with 2 couples I'd met there 1lady & 1 gent & THIER other halfs  so it's good for my husband to talk to other carers & for me to be with people who truly understand , if it's possible for you to get support like that it will help you both !!  If you ever need to talk there are plenty of helpful people on this site & wish you all the very best take care xx

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  • Posted

    Hi Deb, good that you had the sense to moan, it does help to write it, to say how you feel. It's very damaging to hold in the negative emotions that come hand in hand with this illness. 

    I'd been tettering on the edge of CFS for about 10 years. Every now and then I would have an odd turn, where I couldn't get out of bed for a day or so. I thought it was low blood pressure lol.  Anyway, I jumped both feet in to CFS this May, after struggling but failing to recovet from flu in January. I soon realised that there is no medical support, as I'm sure you are aware, and I started my own strategy to recovery strategy.  I made my condition considerably worse first mind you, by 'pushing and crashing' as we do.

    There is a solitude to this condition, maybe because it isn't well recognised by the medical profession, and there is no treatment protocol, you can feel discarded and hopeless.

    I can not recommend highly enough for you to try Reiki healing. I have been visiting a colleague of mine, and of all the things I have tried, Reiki is the thing that has brought me on in leaps and bounds. It is because Reiki heals the 'reason' you have CFS, it can eleviate all the stress and negative emotions that tie you to your illness. Then you can more successfully repair through rest and diet the damage done in physical body.

    I'm not going to bleat on about how good I feel now, as you are feeling low and lonely.  I just want you to be assured that don't have to suffer forever, there are ways to help yourself recover.  A good Reiki practioner will visit and treat you in your own home if you are unable to go to them. Something to think about. 

    Good luck, best wishes

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  • Posted

    Hi I know how you feel I haven't been diagnosed yet only 35 I keep saying the same as you is this it the more I fight it the worse I feel hope you can stay positive and wish you all the best 
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  • Posted

    Hi Deby

    Not this is not for the rest of your life and you have to believe it as you absolutely not lose hope.

    I am 52 had CFS for 28 months and thought my life was over and this made me so depressed and isolated as I used to be very active and social.

    I finally recovered thanks to Acupuncture and Chinese herbal therapy but I can tell you some good News people with Fibromyalgia in France are treated with a gluten dairy and sugar free diet with 90 % of success.

    I did start this diet  6 weeks ago it is difficult and demanding at the beginning but now I have my life back also I still need long nights of sleep to recover from my very active days.

    So hang on there , there is hope!

    Merry Xmas to you all.

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  • Posted

    Know how you feel. Had cfs since 13 now 24. Friends dont really get it, hubby works 80 hours a week and csn tell my 3 yr old doesnt like it. His very good when I say I cant although hate saying it. Hope you feel better soon xxcc

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  • Posted

    Debs that sounds like a long string of bad days! Maybe you need a ME penpal/buddy to talk to, to help get you through the days, you know? 

    How did the PIP action go? I'm applying soon and I'm terrified of getting rejected. 

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  • Posted

    Oh, and just to add. I have applied and appealed twice and got refused. Someone I know of was diagnosed 4 months ago now, and claimed full mobility and the Blue badge...she got it all...with no interview..Its just not fair...
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