EDMESH

1,886 members • 344 posts

IS IT JUST ME.

I was diagnosed with me about 6mth ago,after becoming my doctors new best friend i got to see her so much i know when her baby was due and about her husband and life.

I have had Brain scans,mr scan blood test, been past from one specialist to another.

To be honest i was so relieved to get a Diagnoses i didn't really think about what it meant for me and my family.

In the last year I have had two grand children added to my family and they are my first, it was easy for me when they were born and tiny but now they are toddlers and into everything, they are so much fun I love being with them.

I want to help out and mind them so my kids can get a break every now and then because they are both pregnant again and i know how much hard work it is with a toddler,

but i push myself and have the baby's for a few hours and i pay for it, i usually end up in bed for the next two days and really tired for a week

Is this my life now.

I feel useless i am only 52 and I have always been the one looking after other people, I was a palliative care worker and studied hard later in life to get all i need to help people that needed me.

now i don't remember half or most of what i learned, i had to give up a job i loved, i get panicked when i go out,

I cnt sleep and i am tired beyond belief all the time.

Sorry I am going on I know but is it just me or we we all feel useless now.

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27 Replies

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hi caz. it isn't just you.this sounds like pretty classic experience of m.e or chronic fatigue syndrome. I have had chronic fatigue for about 5 years now. things can get somewhat better. Ihad to leave my job at first, but now I am studying for a phd, slowly! it has taken a lot of adaptingand frustration along the way. you must really assess where your energy is most important.and try to remember the caring thoughts that you gave to other people when you think of yourself. it has taken me so many tiny steps to get where I am today, it has been almost imperceivable. but you can do it and find a new way to be satisfied with life. I always think I will be super woman when I get better with all the skills that I have learnt in managing my time and energy. I hope this helps to reassure you. I'm sure your children and grandchildren will love to have you around in what ever capacity you can manage. all the best, lizzie x

Hi Lizzie

thank you so much for your reply, it does help to know there are people out there that have been through what i am feeling and can help me out.

I will have to just lower my expectations of myself for a while.

I am having a bad few days at the moment cnt seem to sting a sentence together im that tired.

thank you Caron x

ps. you may not have the condition for as long as I have had. everyone's journey is different. within the first few years there is a good chance of getting better.

Hi Kaz, l was finally diagnosed with M.E, 25yrs ago. I didn't know at the time, if l cried at the diagnosis or from relief...that someone actually believed l was ill. It took forever to end up in front of proffesor Findley ..as prior to that, l had rested, thinking l had worn myself out & after some time l went to the GP & was fobbed off with some sort of tonic & the rest of the time that was wasted...going down dead end streets...to no avail. Eventually got reffered to hospital & l wasn't even scanned ...just heart monitoring & the like.. They discharged me...saying they couldn't find anything wrong with me. So l'd been ill for a long time before the professor saw me. All l can say to you is, everyone seems to have varying symptoms & some are more debilitated than others. I personally have good days & bad. Though currently having a major relapse due to an extremely stressful 2014, when l also lost my dad. Just make the best of the good days hun & l wish you well. Jan.x

Thank you so much for taking the time to answer me, its so hard to get my head round this illness, so i think other people must be the same i just dont want to feel this useless.

I will just have to learn to pace myself, i think i am a bit hard on myself some time i was always the one that was the carer i find it hard to have to ask for help.

it has help me a lot looking at this web sight and seeing that there are other people going through the same thing and i am not alone.

Caron

Hi Caron, don't let me fool you into thinking that learning to live with chronic fatigue and pacing yourself is easy.

It took me years to accept things, if I've even fully accepted my situation now. It is a psychologically challenging condition to live with. I have found that getting help to change negative, destructive thought processes can be useful. It is easy to blame yourself and get angry. This is not going to help and just drain energy reserves. Your GP should be able to refer you to talking therapies if CBT isn't available through your local CFS services. Make sure you find someone you are comfortable talking to.

Try to find something positive to do each day... to sit in the sunshine, get a chocolate bar from the corner shop, read a page or two of a book, have a shower, get dressed in something you like to wear. Remember to treat yourself well.

I would advise that you avoid letting pacing rule your life, but also to listen to your body and gradually learn what you can cope with.

I have also found taking a 20mg dose of Citalopram beneficial. Maybe it helps me cope. Maybe it effects the underlying disease, I'm not sure but it has helped to make things more manageable.

I'm sure others will have different strategies, that's just how I have found things.

Keep trying things, and you will find a way through.

Hugs, L : )

Thank you for your advice L i am looking into joining the local me group may help to talk to like minded people.

Your not alone & there are lots of us that will chat on here & exchange notes...good or bad, its nice to know ...especially when your isolated, as l am. Living alone, has its fors & against. It can be lonely at times & I am relying on Care workers half hourly visits..twice a day, thats been put in place via the Council...as a Crisis package. This is also a double edged sword, as some of the Carers are lovely & some...well ...let's just say, I'd rather they didn't come I haven't had such a bad or lengthy relapse in yrs & I'm hoping l will pull back up now the weather has started to improve l just try & take each day as it comes. Don't beat yourself up...as l identify with a lot of what you've said & know how your feeling...but its a counterproductive thought. I used to always be the helper, but now l've learned to say No! Don't take on things that are too much for you... if people can't understand, then they obviously haven't taken the time to understand your illness. I don't look on this site very often, as I've had problems finding my way round it..but if you want a private chat, my email is: bluebird.jl23@googlemail.com Take care & hope things improve for you. All the Best.Jan.x

Thank you Jan

i have taken your email and will get intouch i can mot promise it will always make ant seance tho.

OK Caz..look forward to hearing from you. X

hi I was diagnosed 20 years ago also, by prof leslie findley. I am resident in Essex are you .

Trisha

Yes, I'm in Essex..Dagenham to be precise. My diagnosis came quite a long time after becoming ill, but I've actually been ill for 26yrs now. Jan.

Hi Caz. I'm with an ME Group in Wales and try to look after other people but I've just realised that my tiredness is actually Chronic Fatigue, not from ME but from Post Polio Syndrome that I already knew I had. Fortunately I don't have all the ME symptoms only fatigue but, like you I feel really awful asking for help or consideration by others!

I used a mobility buggy yesterday in Tesco and they were so kind and helpful and took my shopping out to the car and put it in the boot for me, as I was having a really bad day and if I had realised would not have tried to push myself!! I was hoping that going out in the car, just up the road, would brighten me up...but it only made me more tired! So I know just a little bit of how you might be feeling.

DON'T PUSH YOURSELF! REST WHENEVER YOU NEED TO DO SO.

That will help you to get better. Then on a fairly good day, don't try to do everything that you have not been able to do. Just do one thing and then rest. Pacing is SO important. If, every time your body feels a little better you race to get everything done before you loose your energy, you will make yourself worse and you will also stop your body repairing itself. Some people tell you to 'push through the pain' and you will get well, but in the case of M.E. this doesn't work. It just makes the problem much worse and you will take longer to get over it.

One person I know drinks coffee and energy drinks, a lot of them, just so he can go out. He is fed up with lying in bed for days on end and not having a life but to be honest, that is dangerous. He has got awful mouth ulcers and a sore throat as a result of pushing like that but he's sick of being ill and wants to get out and do something and see something beyond the walls of a room. SO, go on, tell them that as much as you love the grandkids, they are too much for you after half an hour!

One of my friends got M.E. at Uni and the treatment and advice she eventually got made her worse. She was so determined to get well, joined a Health Club, got a cycle machine and pushed herself to do things, as she was told that exercise was the cure. Sadly (of course) she got worse and worse and is now almost bedridden. She lived with me for a year and only once did we manage a 'day out' to Pizza Hut with friends and to a children's petting farm up the road. The rest of the time she was in bed or only got to private treatment by car once a week, if well enough to slide out of bed and slither down the stairs.

Do you get the correct Benefits?

Wishing you all the very, very best. Keep in touch please,

Miriam

Hi Miriam

I am at the stage where i have a few goods and a few bad days each week,

things got bad for me around two and a half years ago i had been in hospital they thought i has a stroke but after 8days they said it was a hemiplegic migraine witch made more sense to me as i have always had bad migraines.

any way when i cam home i was still ill week short term memory loss and body just didnt do what i wanted it to. A fer a few weeks i improved slowly bit by bit but the family one by one went down with a winter flue like virus and i got it but i never seamed to recover from it.

That was the start of it for me and it has taken this long to get a proper diagnose.

I am on esa but not for ME i slipped 3 discs in my lower back it came with the job but one has never gone back all the way and slips in and out they can not repair it.

(AND yes i feel like i want shooting ) I need to tell them I have ME but the thought of all the forms and questions medical gets me in a panic just thinking about it, yet another side affect of the ME i get bad panic attacks i forget thing get confused, and fall apart if i go out with people that i dnt know or have to answer loads of questions, i cnt believe this is me i was a senior carer gave meds did ritas med record had tree horses and 3 kids worked 50more hours a week all as a single mum .

Omg im sorry im giving u my life story.

thank you for you reply Miriam keep in touch.

Caronxx

Hi Caron. So sorry to hear how difficult things are for you. The advice from Miriam is the best but I know how hard it is to adjust to living with a body and brain that doesn't seem to function properly and you look normal so there's little understanding or sympathy. You are used to caring for others but now the most important person you need to care for is YOU. Lots of boring rest at regular intervals through the day, even on good days, is the only way forward I'm afraid. No magic pills or treatment, but , like fizzed I also find Citalopram helpful. If you can get the activity/rest balance sussed everything will slowly improve from your anxiety levels to sleep. When you feel ready see if you can get the benefits sorted out with the help of an advocate. And always be firm about how long you can talk or cope with visits BEFORE you feel exhausted. The firmer you are now with yourself and others the better and sooner you will recover even though you must realise this is going to be years rather than months. Don't be downhearted you are not alone.

All the best

Thank you so much for you help and advise it was really needed and yes i think Miriam is right and i do also need to go my money sorted out, as i am no longer able to drive myself i would liike to be able to pay my daughter petrol money as she comes evey day to help me and goes shopping for me take me hospital and doctors even tho the has a 18mth old baby ond one on the way she never com planes. thank you

Hello again Caron. I live in South Wales. Whereabouts are you? Wish I could come and visit you! We are trying hard to support people in Wales and still coming across people with very bad problems with ME who are struggling to survive. I do PIP forms with and for people as they find them to hard and can't concentrate. So if you need help, just say and we can talk more. We've had very good success with claims. I'm away for a couple of days now but then at home for a few weeks. I gave a talk this evening to the people who live in the other flats where I live. It went down really well, and I was surprised how interested they were! All the very best to you. We're here to support you! Miriam

Miriam

I live in Stockport we have an ME group here i looked online but i couldnt get online to it very well. i find the people on here very helpfull and friendley I will get back to u in the week it has taken me ages to string this answer together my brian not working at the mo.

I really thank you all for the bottom of my hart for ouyr help i was feeling so lost and alone yesterday but now i know there are peope out there that will help and who care and undrstand. thank you all.xx

please look up candida albicans its a form of yeast thats invading 21st century , yeastinfectionadvisor.com visit this website and make up your own mind with the symtoms that you are exsperiancing, candida diet can be a reference to foods that may be the cause of fatigue blood test are neg look up the spit test for candida at home its free and tells you alot about whats going on in your body good luck let me know how you get on and i do hope this is a help to you and your family kind regards sil

I have been looking into this Sil,

Did the spit test as I have a lot of the candida symptoms in addition to the M.E. which ive had for 20 years now.

I just don't know where to go from here, as nhs do not recognise Candida overgrowrth ive read. x

sorry

Trisha

Essex

i can recommend a book by Erica Whites beat candida i know it says cookbook ive never used her recipes but the to buy list and not to buy also her story is at the front not only moved me but it has become my bible.....candida albicans grow and root over your organs you have to kill it rather than feed it please research have a look at yeastadvisor.co.uk as the die off can be far greater than the symtoms you are having now ....doctors and hospitals do not want to recognise this illness due to running a bussiness and making money all they want to do is give you something to ease symtoms but this is far greater cos the meds will detroy your good bacteria which is working overtime at this moment in time hope this helps kind regards Syl

Can I Add a positive note . I was diagnosed with me ... had carers , wheelchair bound . Then gradually things changed walking , talking properly and got life back. Now living a full life but it's always on my shoulder when I get a bug, get too tired , even going to the dentist but I try to plan and some how function

totally understand. I am 50 this month and feel like I am 90 sometimes. I went on holiday a couple of weeks ago and did some sight seeing and I thought took it steady but two weeks later I am still paying the price. I was in bed for 9 pm last night and dragged myself out of bed at 2.30 this afternoon. I never feel "well". Up until christmas I was working 12 hour shifts as a labour ward midwife. I just dont know what to do about my job. I dont know if illness is enough to get ill health pension or will I ever be well enough to work. Hands are terrible. Memory terrible. I struggle on the phone, It is like I can hear the voice on the other end but the words dont get into my brain.

tired and frustrated x

Hi love,

I was diagnosed about 20 years ago by prof leslie findley, at national m.e. centre Harold Wood. I dislike the term cfs that the nhs use, as it a different set of things altogether from M>E>

I so understand where your at, as I,ve goine up and down over they years, these last two downhill, I,m afraid. I also had a first grandchild 16 months ago, and I adore her and look after her one day a week, but lioke you I,m in bed for next two days wiped out !!

I am looking into why I feeling worse, considering having a test done privately for Candida ( yeast overgrowth) in gut, as it mim,ics M.E. and makes symptoms worse too.

Its important as we get older that we don't put everything down to ME, as otherwise we will end up missing another ailment.

I,m 59 by the way

Trisha Essex

Snap! I'm also 59.

You aren't useless but you will have redefine yourself to yourself - no one should care what others think. You'll have to replan your life as ME does limit what you can & can't do in a variety of ways. The best thing that I did was to have cognitive behavioural therapy so that I could change the way that I saw myself with ME. I also review what I do each week to ensure I have rest time before and after activities. It is about changing mindset as well as living habits. Develop techniques for remembering things, this an individual situation, and try not to get frustrated with yourself as this only makes you forget more. Not easy but you can still have a good life if you readjust. Good luck

EDMESH

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