Looking to connect and not feel so alone..

In the months leading up to the last 7 weeks I'd also wake up feeling absolutely shattered and like I'd had no sleep at all sometimes and this would be accompanied by the neck ache mainly. I've been offered CBT and my work is being so understanding but I've just got so depressed as I used to be so so active (gym 4 days a week/rep for colleague work group/nights out with friends)

I had to comment on your post as so much of what you wrote rings true to me too. I think it's so easy to feel lonely and isolated with CFS. I really struggle to maintain my very small friendship group and often find myself going along to things that have been arranged, knowing fine well that I don't have the energy for it, just to try and keep up some sort of social contact. I'll then pay for it for a week or 2 afterwards. It's like you can never win! I think that's when online contact can be good. It's not the same but it's definitely better than nothing and can help you to feel connected, which is so important.

For the past 3.5 years that I've been struggling with CFS (although I've only recently accepted that this as a label), I've tried to maintain my life the way it was. This meant that all of my energy was spent trying to maintain my job. I have a professional career that is very stressful and emotionally demanding and I would spend all of my free time recovering from my time at work. Looking back, I wish I'd prioritised my health because now that's what I'm having to do and I think I've made things a lot worse by trying to keep going. I'm now signed off sick too. I'm in the middle of trying to decide what I'll do. I know I'm going to leave my profession but I'm trying to work out how to do this. It's going to be a financial disaster for me but I've come to realise I need to prioritise my health and my life.

Through all of my experiences with my health, I've become quite spiritual (not religious but I've started to find meaning in things) and I've come to believe that my illness does have meaning, it's like a little messenger, teaching me something I needed to learn. It's taught me that my needs have never been a priority; they weren't when I was a child (awful parents) and I've just taken that as the way it should be, so I've always looked after others before myself. I've made a whole career out of it! This has just worn me out completely. I'm now learning how to really look after myself and I've still got a while to go. It definitely does not come naturally to me. Even when I'm doing all the self care things, like yoga, meditating or even having a bath, my thoughts are not mind and gentle, they're pushing me to do things because I 'should' do them, it's good for me, it will help me get better, rather than just being kind and caring towards myself.

I think I'm maybe rambling but what I'm trying to say is that focusing on you is most likely exactly what you need to do. I truly believe that deep down we all know what we need but sometimes it's hard to stop and listen. And sometimes we don't like what we hear! Once I stopped and listened, I heard that I needed to just STOP and I needed to have space and time to process my childhood experiences and express all my repressed emotions. I knew this meant leaving my job. I heard all of that about 2 years ago but thought I couldn't do it, I didn't have time, I needed to keep my job, I needed to keep myself together, I couldn't stop working because I needed the money. I thought, I'll do it when I retire (about 30 years away!) It took me 2 years and so much more things to go wrong to finally realise that this wasn't a choice! I NEEDED to do this. So that's what I'm in the midst of just now.

I'm not saying this is the same for you but what I am encouraging you to do is to do what you need to and really look after you. And if you think it's not possible, it is, you're maybe just stuck in your thinking.

Good luck! X

Hey,

May i start by saying i hate the term CFS. Myalgic Encephalomyelitis (ME) is much more accurate in my books and in conversation is often received differently than "Fatigue Syndrome" because people don't often understand the severity of the condition.

I got diagnosed as i finished school. I am very lucky to live next to one of the best medical research facilities in the world down here in melbourne Australia and have a very supportive CFS/ME specialist. I believe it came to me from me chronically exhausting myself. I was training hard in Jeet Kune Do and do an accelerated learning program in senior school, whilst also playing video games. I often starved my self of sleep and didnt allow myself relaxation time apart from video games. It all caught up and just hit me like a truck one day.

My CFS/ME was accompanied by severe IBS, i suddenly become Fructose and Lactose intolerant and had chronic diarrhea and GERD for close to 6 months, which still comes back in spells. My doctor explained that ME/CFS is a neurological inflammatory disease which can impact upon the communications between the body, IBS being typically the body not communicating with the colons correctly. I also have many others symptoms such as Arthritis, Muscular Pain and obviously debilitating fatigue.

I kind of lost my self through all this, i couldn't do a single thing i enjoyed. So i made an effort, i applied for a special circumstances online university course and achieved my degree in herpetology. I currently breed Australian Reptiles out my home as my active income and practice Jeet Kune Do water exercises as pretty much my only form of exercise.

Recovery is slow but happening after 5 years, i think being hopefully is a key too it.

 

I'm so sorry that you are having such a difficult time, Lexi. CFS/ME can be such a depilating illness and not a lot of people have a good understanding of what we are going through. 

You're not alone. I completely understand how you are feeling. You life is not doomed. I think you just need to find a way to pace yourself, so that you are not feeling completely overwhelmed and exhausted all the time. When I was first diagnosed, I had a full time teaching job. By the end of the day, I had to drag myself to bed only to go to sleep early and start the day over again. I spent my entire weekend resting up for the following week.

I finally had to make a change. I ended teaching part-time instead. This allowed me to go home mid day and get the right amount of rest. Part of recovery with CFS/ME is learning how to pace yourself. Think of yourself as having a battery that never fully charges, so you must use the energy you have saved very wisely. Getting the proper type of sleep is also so critical. I take a tricyclic anti-depressant at bedtime to help promote REM sleep. So many of us are exhausted, but can't actually fall asleep. This helps with sleep. 

I hope that you can find some ways to slow down, regain your health, and accept the "new" you. Hope you feel better and remember you are not alone. Karen

You're welcome, Lexi. I know there is not much we can say or do to relieve your symptoms, but I agree it helps to know this is not in you head. The fatigue is so overwhelming at times that it is painful! I just want to cry sometimes. And it is very sad that we never wake up feeling refreshed as we once did. I long for that so much. I am just thankful  on the days when I wake up without the intense brain fog that I often experience. Hang in there and just keep trying to pace yourself....take in slowly. Hope you begin to feel a bit more in control of your symptoms soon. Karen

Hi I havent been here for a while.  I came because I have a relative who has suffered CFS for four years and wanted to find out more.   His recent experience might, I repeat might be helpful for some sufferers.  I realise that this illness seems to have many presentations and symptoms so it may not be helpful to you.   He has started taking a supplement to support his adrenal system after seeing  a doctor who is a specialist in thyroid treatment who suggested this.  So far it has made a positive difference to his condition and the tiredness as subsided.  It upset his stomach quite badly though so he cut down the dose by half.   His stomach is another one of the problems and he sticks to a strict diet - basically NO SUGAR.  He takes pro biotics to help with his stomach too.  Hope this helps you.