Imagine living in a world where you didn’t feel alone with your condition

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Imagine living in a world when you didn’t feel alone, your doctor believed you for feeling so poorly for so long and with so many symptoms and you were able to get up and out of bed without feeling both emotionally and physically drained smile 

What a world that would be. 

I know I have it a whole lot less severe than most.. but I’m still in denial and I still question “why me?” Daily sad 

Any recommendations to stop feeling so sorry for myself?😂 

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  • Posted

    The first part I cant imagine.... wish it would happen though... as to how to stop feeling sorry and why me? hmmmmmm acceptance and then looking at how you can manage where you are an how to make some progress.... - sorry for the short answer but today is not a good day... (or week....) but I wanted you to know you had been read and there is support even if limited out here...
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    • Posted

      Hello Andrew, sorry to hear you’re having a bad week may the next be better for you. 

      Acceptance is definitely something I need to find .. it’s been 6 months and only yesterday did I apply for some financial help. I’m still very much in denial.. keep thinking, hoping, praying someone will pinch me and wake me up.. doesn’t feel realsad how can it be that 4 months ago I was well on my way to achieving everything I had intended to? I worked full time in a nursery, full time as a photography student and full time on excercising and eating right.. so what did I do wrong? Why was I dealt these cards? It’s not fair. Thank you for your response cx

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    • Posted

      Meg you did nothing wrong. You are going through a grieving process for the life you had. It is perfectly normal and expected. Six months may seem like years to you , but with this disease it is a mere blink of an eye. Give yourself time to adapt. Take care x
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  • Posted

    Hi Meg, I've had these condition for four years and have felt really sorry for myself at times, along with anger...yep the "why me". I longed for my old life, one where walking 10 miles on a Sunday afternoon was a piece of cake instead of this life where changing the bed linen on a Sunday has me needing to rest for an hour or two. It totally sucks. But it's ok to feel down about it sometimes, you wouldn't be normal if you didn't. Rant on here or another support group, I'm sure there will be one or more on Facebook. But know you are not alone and WE believe you. 😁😘

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    • Posted

      Hellosmile thank you for your reply, it’s totslly normal to be thinking “why me” and I won’t for a second believe otherwise. Off to see my go today to hopefully find a support group near to me where I can rant and feel heard.. there’s only so much my family and close friends can take .. and I really don’t want to burden them with problems they can’t help. Xx
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  • Posted

    Feeling sorry for yourself and the 'why me' is a waste of time. In 20 years I have never said 'why me' NEVER! It is what it is can't change that. Hell no one in their right mind would choose this. It is very hard on your loved ones to choose that way of thinking. No matter how crappy I feel I get dressed everyday pick one item I can tackle that day. Bad days are just bad days I just deal with it. I have to stay positive. I do b***h alot oh well. My family has to see me trying to do new things. For me gratitude changes my attitude. I'm truly grateful for what I have. However I have grieved many losses due to this disease. We don't talk enough about the grief we go through as well as our families. Self talk is very important !! Don't look for your power from others it's there find it. You have to make new rules now. Just take the day in front of you. I can't make plans because I can't remember s**t. I only take the day I have no more...just today.

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    • Posted

      Totally agree with all you have said Lisa ! I have never said why me either. I never have good days . everyday is a struggle. But I always get dressed and do what I can. Isn't much and is exhausting , but better than beating myself up about it. We all get peed off at times. Would be a lie to deny it . ! I have had 22 years so admit I have had a long while to come to terms with things. Although I will never get over having to end my nursing career. Broke my heart .

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  • Posted

    I know how you feel, everyday is a struggle for me just to get through. At times I feel like giving up but remind myself "God brought me to it, He will bring me through it"

    I pray everyday and focus on being grateful for all the little things I still can do becsuse it could be much worse.

    I live in the moment and take it one day at a time. I don't worry about tomorrow. I don't see the point with this illness. I wish you well and stay strong. We all have our moments of despair with this illness. You are not alone.

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    • Posted

      Good for you for not letting this illness define you. Our mental health and our spiritual health needs just as much attention as does the physical. It is vital to our daily struggles. Vent away...we are listening!!!
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    • Posted

      I think we have discussed this before taro, but I am so with you on this. This disease does not define me either. And I take each day as it comes. I have had ME going on 22 years now. Yes every day is a struggle and I am housebound , but constant negativity is wasted energy . I have never sat here asking why me . why not me ? I am not special . this disease has stolen a lot in my life, but it will not destroy my spirit . I have a hell of a lot to contend with and recently had a hole in one of my retinas . I was not one bit scared . had a huge impact on the damn ME though having to go to hospital where I had quick laser treatment to seal the holes. My vision is full of floaters . just something else I am having to get used to.

      I am fortunate having a caring partner who is supportive . I am aware a lot of people with ME do not have such supportive partners and family. It must be incredibly hard to feel so unsupported. I really feel sad for such people .

      Take care everyone x

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    • Posted

      This past year has had many extended family demands. I had to fly to all over the country dealing with family stuff. One issue was a suicide, aging parents and crazy family members. If you looked up narcissist disorder you would see a picture of my entire extended family. I got the guilt gene no one else did. So for my health I had to draw some boundaries. Had to kick almost of them to the curb. Finally after 59 years I feel relieved and happy. Hey came down to me or their demands. I won!!! I have to put my health first these days and everyone understands. I am blessed to have a supportive husband (36years) and daughters.

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    • Posted

      I’ve learnt to do the same .. as said as it may be .. I’m determined to get past this.. 
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    • Posted

      Find the best in the day. I don't know what the hell else to do anymore. I smoke alot weed these days. Eat my edibles for pain control. It also keeps my depression at Bay. I have my daytime weed and nighttime weed. And it helps me think. My family is very supportive because they have seen me calm down and find some relief. They are happy I'm not on meds anymore. Doing a more holistic approach. I don't like helplessness. Makes me crazy. So it keeps me calm I need that. Most of us diagnosed with this were type A personality. Lots of trail and error.

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  • Posted

    Hi I don't know the answer sometimes I cope ok and sometimes I don't, I've had it 14 years and today I'm really fed up with relapses, the lonely world where I have to make excuses for feeling this way . On a plus side I started running and managed to build up slowlywhich made me feel good until my relapse this month now I'm stuck in the black hole again x

    Always find something to laugh at 😁

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  • Posted

    A quick response to everyone / thank you so much for hearing me and taking a second to respond that in itself is help..

    But to those who have had it the best part of their lives .. 20+ years.. answer me this.. there must have been a time you questioned your worth.. why me? Why now? We’re only human.. and I’m still so new to this sad would absolutely be better for me to pick myself up and brush myself off - and most days I will. But some days are near impossible.. and it’s a battle frankly I don’t feel like adding to the list. 

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    • Posted

      Hi meg. On the whole I often question even life itself . it is an over rated experience to be entirely honest with you. But that has little to do with my ill health. I was a paediatric nurse for many years and saw and experienced things that would probably make most people question it. It is a struggle everyday yes. Constant pain for which I cannot take pain meds as I can not tolerate them. All the cognitive issues drive me nuts most days. Today my head is pounding and part of my face numb with it. All manner of stuff, but I refuse to let it all beat me. It has taken far too much away as it is. Indeed we are all human and it is natural and understandable to feel worthless at times. For me it is the flippant attitudes of other people that can get to me and make me feel a waste of space. I have gradually learnt to ignore these ignorant people but odd times there is still the odd one that will get to me.

      My mother died nearly three years ago with negligence issues surrounding it. I have ever since been fighting the issues . has been unbearable and exacerbated the ME. I often wonder how I have got through all that . ! Then my 23yr old cat died last year. I have never Grieved properly for either due to all I have had to do and the effects on my health. I am not complaining or making out my problems are worse than and one else's. My issues are nothing compared to many other people. Just doing a bit of sharing I suppose.! Sorry .

      I have no idea how long ME will affect you meg , but I do know it is fairly early days for you as you have said this. Please try to be kind to yourself and allow time to come to terms with how things are for you. During that time I do so hope you will even start to improve. Even if it is just a little. You are completely worth it and try not to let anyone make you feel otherwise. The days you feel it is impossible , just go with it and it will pass in a few days. As for picking yourself up and brushing yourself down, that is not my personal stance . I just do what I can and if I can',t , I don't . there is a phrase ' no such thing as can't'. I have had his said to me even by ignorant health care professionals .Well 'can't' is reality ! I know I overdo it at times. Sort of punish myself really. Daft I know and the opposite of what I would suggest. As pushing yourself too far is counterproductive. I am housebound and don't do that much, but I do feel it important to have something pleasant to focus on. I make cards .just do a bit at a time. Gives me something to be proud of. I also try to help others by chatting and sharing experiences. The little things are often the most special and precious things. Just watching the birds and squirrels in my garden gives me such pleasure. From myself and many others I know with ME and other chronic illness

      A rheumatologist I once saw who was supposed to be sympathetic to people with ME, was an absolute horror to me. His favourite phrase was no pain no gain. He said ME/CFS is not an illness. In the end I just left the room. All that put me back about three years in my head. I lost most of the self esteem and self worth I had struggled to build back after having to finish work. It was the having to give up work that is took a major blow on my self esteem and worth. I suppose it has been so long I tend to forget how I felt years ago. But I will never forget how it felt as I still miss my work. But in general I can honestly say no I never think why me. But that is my approach.we are all individuals with different coping strategies and different views. There is no right and no wrong way. The main thing is allow time to adjust .

      Take care Meg. It does help sharing how you feel. Especially here as there are so many who will listen and understand. Write as often as you need sorry i waffle a lot !x

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