Chronic fatigue

Simmo123 · ‎06-08-2017

Had Cfs for 18 years there seems to de no help or no one that cares.it messes with your head you can't work to unwell .even friends and family think you are lazy.cant be around negative people.had heart attack reasently wife left dog died fairly lonely

Simmo123 · ‎09-08-2017

Thank you again for caring I just feel so overwhelmed so much to do..talked to shrink 2 visits he said I am fine don't know that he's real good at his job or if he has to much money? The story of my life I find it hard to get any kind of help.when ex left wanted to talk to doc just wasn't coping 4 day wait.finaly doc said you don't look like your coping I will make you an appointment next week 140$thanks for coming. I am waiting to see specialist .was put on antidepressants once sent me to a dark place took a long time to come back from.not sure I want do it again I had support then now I don't. CFS yes strange name the fatigue I can deal with the muscle aches and pain just does not let up I am great full not as many head aches lately.my head was in good place till ex left just have no answers tend to think all kinds of stupid stuff not helping.Well I've never text so much in my life I do appreciate you listening I do hope the sun is shining where ever you are And you have a wonderfull day.i think a little ceremony might help thanks again 😎

Guest_9809 · ‎10-08-2017

Hello Simmo123. I see you became a member only a few days ago, so I guess I can still say "welcome" to you.

I have just finished reading your thread, and am very saddened by all that you are currently dealing with. Life is very unfair sometimes isnt it?

I realise that CFS is quite a complex illness and they dont know what causes it. Obviously it results in extremely painful muscles, and inflammation in the brain and spinal cord. Have your doctors provided you with any sort of timeframe as to how long it is likely to hang around for? I realise that it can take years for some to fully recover, but gee 18 years is a very long time to be dealing with this. I expect that after 18 years you would have gone through all medical options to learn what works best for you?

Often when we have a long standing or chronic illness people around us tend to think we should be better by now, and that it is purely a case of laziness which is preventing us from leading a completely normal life. However as you would know all too well, any form of exercise makes your CFS symptoms worse. Any exercise program needs to be a slow and graduated process, sometimes just something simple like stretching is enough, or too much.

How are you going since your heart attack? Giving up the cigarettes cold turkey would have been very difficult, but worthwhile financially as well as health wise.

Really sad to hear that your wife, whom you still love, has left you. Its a very sad fact of life that sometimes people grow apart, lead different lives, and often it is in both party's best interests to part company.

How gorgeous that you have three beautiful children and 2 little granddaughters. I have 2 step children and 6 grandkids of my own. So I know how much pleasure they can bring, even when we are feeling particularly low. Do they live nearby, where you can see them regularly? Unfortunately mine live 5hrs and 5.5hrs drive away, so we dont see them as much as I'd like.

You broke my heart when I read about your dog. I've always had dogs. My current dog is a mini foxie X chihauhau, a little 4.8kg pocket rocket. Totally adorable and my best mate. Always there for me, and knows when I need some TLC. They are so perceptive arent they? What breed was your dog? I hope it doesnt sound insensitive, but is there a chance of getting another dog now? Not as a replacement of course. When I lost my previous dog to a brown snake bite I swore I'd not get another. But so glad I did.

Taurus xx

Simmo123 · ‎10-08-2017

Hi thanks for your kind words.every thing seems so hard at the moment.yes CFS is un believably difficult to get your head around muscles you didn't know you have ache constantly the more you do the worse you feel.i ask myself constantly why me . Depressed ? I try hard not to be not working at the moment I miss my dogs wagging tail cheeky look she was a bull Arab x bull mastiff big scary looking dog but so gentle loved kids.i would love another dog but I don't know what to do with my self at the moment . Soon to be homeless. Grand kids came for Visit 2weeks ago miss them so much they live in different state.just want to hug them .i have been lucky enough to be chatting to pepper she seems nice thank you

Simmo123 · ‎11-08-2017

Life does seem unfair but there is no point winging no one realy cares.help from doctors that's funny .time line no one knows everyone is different apparently.i have been labeled and thrown in the too hard basket.ive found trial and error don't over do anything or I loose days very frustrating I was always short and angry didn't like who I was becoming could not help it . I would snap then realise how rude I had been didn't like who I was becoming.i could not help it . Since heart attack I've started to see what's important in life.and it's not snapping and being rude.i don't think people get I'm in constant pain and it does mess with head.so hear I am all alone it has been hard for wife and kids.so I tell myself the wife deserves to be happy . Haven't had angry outburst for 2 years now so I feel good about that to little to late.yes I managed to work for awhile feeling guilty not providing I think that has set me back enjoyed work fatigue took over again was ruining my life no social time to tired.

I have done some volunteering.do feel good helping out .doc has no answers most look at you like your making it all up might as well throw money out the window I've told myself not worth going back unless bleeding.ive looked for help hard to find have found yoga good doesn't fatigue me like other exercises I do what feels comfortable.as for new pet not now I don't know where I'm going I just have to leave.her name was Sheaba she was a bull mastiff x bull Arab she loved kids.i miss her so Mutch . Kids all live away that's hard just want to hug granddaughters .thanks for listening

Guest_9809 · ‎11-08-2017

Thanks for your reply Simmo.

So you are like me, not close enough to your grandkids unfortunately. It would be nice to be closer and see them more regularly. At least you had a nice visit 2 weeks ago. Would that have been during school holidays? How old are they? My 6 grandkids range from the eldest who just turned 19, down to the youngest who is 4. Both sets are great kids, and I am proud of my step daughter and step son for bringing up good sound sensible well behaved kids.

Hey well done - it sounds as though your heart attack has resulted in some really good positives for you. Not just having given up the smokes, but also a realisation of what is important in your life.

Yep, constant pain does mess with your head, and you have been living with this for so long. I have a long term serious back injury which results in chronic pain. But it does vary from relatively mild the majority of the time, but then it will escalate to extreme at times. And when it gets to that stage I am barely able to breathe without extreme pain, and muscle spasms. I become bed-ridden when it gets to that stage and on strong pain killers.

I actually suffer from PTSD, so anxiety is my main problem when it comes to my mental health. But I find that whenever my pain becomes really bad, it definitely coincides with bouts of quite severe depression on top of it. So its little wonder that your long standing CFS has resulted in your depression.

Good on you for doing some volunteer work. It does do our soul good to know we are making a difference to someone else, making their lives a little better than it would have been otherwise. I also do volunteer work. Besides being a volunteer here on the Forums as a Community Champion, I also volunteer in a local Nursing Home. I am a Community Visitor and visit people in nursing homes who do not have family or friends nearby. So they would not otherwise have any visitors or friends to talk to.

I'm glad that you have found yoga helpful. I go to my local gym and do what is called a "Body Balance" class. Its a combination of Yoga, Tai Chi and Pilates. Mainly lots of stretching and balancing things, so its fairly gentle and something my body will usually handle reasonably well. Although there are weeks that I just cant do it.

Sheaba, sounds lovely. I hope one day you will be in a position to get another dog. I had a Kelpie until 6 years ago, a working dog as we had a sheep farm back then. Wonderful nature, and great with kids.

Taurus

Simmo123 · ‎12-08-2017

Thanks for listening Taurus I sound so negative . Not what I want .im hoping these feelings of being angry confused frustrated unsure hurt betrayed sad lonely pass soon .happier note my granddaughters .one just turned 2 the other 4 months I love to lay on floor and play so uncomplicated.to all you parents enjoy your kids spend time with them they grow up so fast you don't get the time back.as a father I was lucky enough to spend. A lot of time with kids growing up there's a positive enjoyed it so Mutch were teaching kids and there teaching us .sorry to hear about your back pain .the one thing with CFS different parts of your body give you pain keeps it interesting .lately lower back legs constant pain sitting standing no escape .threw all meds away they just give me new list of problems.i try to sleep when feel real bad.i try to tell my self I am getting better but to be honest I'm not feeling it.people always say what's wrong with you you look pissed off no I'm in pain .would like to talk with other CFS sufferers .some times very antisocial just to hard when you don't feel well .hoping specialist can help but deep down I'm not going to hold my breath negative again I know . been waiting 2 months still no letter.well sorry to babble on I think I need to get out of this house it has to many memories every where I look.so many things to do very overwhelming.

Guest_9809 · ‎12-08-2017

Hello again Simmo.

Yeah I totally agree, kids are great, and help to take the focus off our own pain and other issues. Pets serve a similar purpose too. Its a shame that your home situation is unsettled right now, which means a pet is not practical. Perhaps a bird? I have budgies and they are great, I keep them in a large outdoor aviary. Nonetheless they are very friendly and whenever I walk in there, they all come and fly onto my shoulder or fly up and perch on my hand to receive their special treats.

I'm sure it would be very helpful for you to be able to talk to other CFS sufferers. Have you enquired about any support groups, either on-line or local? Just a thought.

I just had a little look on-line for possible support groups for CFS. It appears there are some national ones which cover both CFS and Fibromyalgia. Google ME / CFS Australia which is the Australian arm of the organisation. They will direct people to independently run state organisations, depending on what state you are in obviously. Alternatively either your GP or treating specialist may be able to direct you to other organisations which are relevant to you.

Wishing you all the best Simmo. Oh and I keep running out of space when I reply to you. This is the first opportunity to fit in a comment on something you said yesterday. Yes ... you're right, Pepper is VERY nice. (-:

Taurus

Simmo123 · ‎12-08-2017

Thanks for help with other web site I will have a look .i am not very tech savy getting on here was a challenge.you made me smile thinking of all your birds flying around.i hope your back doesn't give you to much grief.

E_man · ‎08-11-2017

Hey Simmo. You still logging in here?

I'm 50+ and had cfs for 17 years. Had heart pains too and spent a lot of time unconscious on the edge.