Negativity

[sumdum]

How do people deal with negativity I have a lot of it myself as I get down why I have a bad flare up and feel it’s very unfair but how do you deal with it when it comes from others like Work collages and family who simply don’t believe you or say things like how can you have so much wrong your only young. Any advice would be much appreciated as all of this is regally getting me down lately 😕

[Sarah_1988]

Hi, I’m sorry to hear that you are struggling with negativity.

I personally have found that it is a lack of understanding about the illness that leads people to be unsympathetic. It can lead them to make silly comments like that. We’ve all had it in some way, shape or form, I’m sure!

I came across this old article written by someone suffering with CFS published by the Metro online and it described perfectly what it feels like to have it. Google ‘Chronic Fatigue Awareness Day: 10 things only sufferers know’. I shared it with my husband, my boss, close colleagues, friends and family and they were all great after reading it. NHS websites etc. tend to list facts about the condition, or the various symptoms, but reading someone else’s experience about what it actually feels like seems to resonate better. For anyone that remains unsupportive after hearing about it, probably isn’t worth your time. This condition is already draining without you having other people’s negativity dragging you down. You need to be able to just focus on your health.

Regarding your own negative feelings, I found Fearn Cotton’s book ‘Happy’ really helpful. It’s full of helpful exercises and tools to help you gain a positive perspective, without feeling too “self-help”. It isn’t intensive at all and it’s something you can pick up and put down in short spells.

I hope you gain more support and feel more positive soon. You aren’t alone, it happens to us all.

Sarah

[sumdum]

Thank you I am pleased I am not the only one and a think your right it is because they don’t understand the illness or how it effects you day to day. Thanks for your support and I shall look into both of these. Thanks agin 😀

[Sarah_1988 in reply to sumdum]

No problem at all! I hope you find it useful

[tobby1428]

hello sumdum,sorry to hear about your problems.I have struggled with chronic negativity for the last 23 years following a really bad illness,I nearly lost my life,I lost my job, to put it bluntly I nearly lost everything.my wife has endured so much with me,how she put up with me I will never ever know! I get so angry and frustrated with life in general ,eVEven health people get it wrong,saying things like pop up here when I can hardly walk never mind pop popping,a lot of time its lack of thought,it still hurts.the number of times that I have cried my eyes out because of someones thoughtlessness is in the hundreds.I still get thoughts about ending my life but I cannot bear the thought of leaving my beloved wife on her own to try and sort things out. I thought that I had a saviour when I discovered health unlocked ,reading about other poor people with health problems etc. brought me back to reality,however as much as I could symptathise with them I could not offer any clear advice,I could read their blogs and try and offer my understanding.this all came crashing down when someone started writing that cfs does not exist nor apparently my own problems,my son tried to tell me that this fool was nothing but a troll!!! but I was not listening,he really got to me,so much so that I had to complain to health unlocked. I will admit that they did respond very well but whilst I still read all the blogs I could not bring myself to reply until now.I take great solace in listening to what I call meaningfull music, I have recommended various cdds to some of my friends and they say it has helped even to the point when we could discuss what the music means to us. I listen to a lot of new age music by the group enigma and it has really helped.I now know that I am nothing special and that ordinary life goes on around me but I seem to have found somewhere special I can retreat to when times are bad even though its in my mind.so dear sumdum please excuse my rabbiting on but in a weird sort of way you have helped me.I wish you all the love and understanding in the world,keep writing no matter hoe you feel,I now know that this does help!!!

[sumdum in reply to tobby1428]

Thank you so much for feeling ready to reply to me and I am so sorry to hear your struggles and no wonder you have been feeling the way you have it’s really not a easy life and if it wasn’t for my partner I too wounder some days if I would be here if u didn’t have him so your wife sounds like a angle as well. I will have a look into this music as I have tried mindfullness but find it hard when my head is buzzing and their is so much going on around me so music sounds another way to try. Thank you very much and keep fighting on my bad days my partners says what your dealing with today can’t kill you so keep going because you have a lot to live for. Hope this helps

[tobby1428]

thank you SO MUCH,your reply does help.a quick tip for listening to music,try using headphones so that you can totally immerse yourself in the music! also try using you tube first so that you do not like any of the music you will not waste any money

[sumdum in reply to tobby1428]

Thank you that sounds a good idea I must find my head phones now 🤣

[Karenlynne in reply to tobby1428]

Hi tobby. I'm so sorry that you are so low and dispirited. I truly empathize but am glad you have found music helpful. Have you heard of wholetones healing frequency music 🎶? Very different to enigma though. You could look it up on the web. It's the only music I'm able to listen to and not often either. I get very low as I've been bedridden for 51/2 years and am totally dependent on my husband for all my needs. I feel like a nuisance and a waste of space. Just a lump of lard with a brain that won't switch off. Now I'm allergic to all metals which causes severe pain in my back as I've got pins and plates in it. So I manage two hours sleep 2-3 times a night which impacts greatly on the m.e. Like you I stay alive only because my husband says he'd be destroyed if I killed myself. M.e takes away your life and leaves an existence. As a Christian I pray.for others mainly but scream out to God to help me too. At least praying for others in a worse situation takes the focus off your own needs. Imagine being a Rohingya Muslim with m.e!! It makes me grateful for all the good things I do have and helps me get my problems into perspective as well as count my blessings even for a comfortable bed. Have you read Sarah myhills book? Maybe helpful?? Wishing you well. Ignore the ignorant and focus on those who really care. Karenlynne

[Antony_M]

All I can say is that it gets a little bit easier over time.

I've realised that for the most part people's sympathy, compassion and understanding are not fair or fairly proportioned, but subject to bias as a result of their inherent favouritism and prejudice (including gender, age, appearance, and attractiveness) as they decide who deserves what, add to that a stigmatised and misunderstood illness, and all kinds of outcomes arrise.

I've had friends dismiss my illness then tell me all about someone else who's 'much worse' followed by the spoon analogy over energy consumption. The other person might be more mobile / able to walk, more independent but it doesn't matter, you can have the same diagnosis and severity but that doesn't matter either, if people don't listen or apply an objective criteria or assesment to decide who deserves what.

I met a man who was diagnosed with Multiple Sclerosis and when he tried to tell one of his friends, they immediately interrupted him to talk about someone else 'who was much worse' and how he should be thankful without any concern for how his MS affects him or his out look for the future.

I've lost touch with certain friends because they didn't accept my illness and our friendship was based upon something we shared but which I can't do anymore, e.g. playing sport or going drinking and I'm not useful to them anymore as I can't take part. Some were unduly critical of my illness and truth be told didn't really like me anyway because of my low empathy and autistic traits; my mother has had similar life-long problems being accepted by others and fairness has nothing to do with it.

The negativity isn't fair nor have you done anything to deserve it, but eventually you just move on. Sometimes it can be simpler to meet new people and negative people in the workplace usually move on if their need to continually moan and drag others down isn't being met, just don't feed them with any information.

If it's a persistent struggle, I'd recommend counseling as a one on one session. Having someone who's impartial, on you side and will listen can be enormously beneficial. ME / CFS is a loss that you have to adapt to. I've had sessions paid for by my health insurance through my work, though it may be possible to get referred under a mental health route by your GP or pay privately.

[sumdum in reply to Antony_M]

Thank you 😊

[FigGreen]

Hi, I've only just subscribed to this group so only just saw this but really wanted to answer. I used to feel this way and I think it was because I didn't accept it myself. When I finally realised there was no escape hatch and I really did have CFS/ME I set to learning to cope with it. What other people think is their problem. I'll try to help them if they don't understand, but in the end, do I really want to be around them if they persist? Nah!

Over time, I've learned, often the hard way, how to pace, etc etc. There's a fabulous group called the CFS/ME Society and they have a newsletter and meetings if you can go to them. The newsletter is good as it often includes strategies. I guess it's about finding the things that help you and then being kind to yourself. At one stage I used a lot of YouTube guided relaxation meditations (other video posting sites are available if you're clever enough to have heard of them, I'm not techie minded). I trained in hypnotherapy and use it on myself but there are loads of free meditation videos. Then there's rest breaks throughout the day, knowing what makes you tired (stress, physical activity, concentrating etc) and not doing too much of it. All that self care and eventually I realised I could live my life even with the limitations of CFS/ME. Dont get me wrong, boy do I get frustrated and if it wasnt for my sense of humour I dont know how things would turn out! But that's just part of being real.

I really hope things are going okay for you sumdum. There are two things that inspire me in the hardest times. I only have CFS/ME, I'm not CFS/ME itself. Then there's the wonderful line in Jurassic Park: Life will find a way

[sumdum in reply to FigGreen]

Thank you so much I can use and try a lot from that and I love the saying at the end as we don’t choose this life but you just have to find a way to pick up and keep going ☺️

[virchi]

Dear all, i have done the Gupta Programme and helped me a lot about conditions!!

I recomend it !!

[tobby1428]

hello again sumdum,my circumstances have not changed one iota,however being a gemini I sometimes have two sides to my nature.at the moment I am in a happier frame of mind so if a doctor told me I only had 2 weeks left to live,then I would ask for the first week in june and the last week of December.humour can help,i try to keep away from the people who make silly comments and make ones life a misery.a plague of piles on them!i made a big mistake in getting in a bit of a slanging match with a fool who went by the name of frankensteins monster,this person tried to tell all and sundry that cfs did not exist and even went to insinuate that the condition that floored me also did not exist.to say I was upset would be an understatement.every day I read about some poor soul suffering and it can reduce me to tears,never mind some fool saying it does not exist.in the end I had to complain to health unlocked and thankfully they sorted it out I do not know of any miracle cures to help you sumdum but what I do know is that you cannot get a better caring community than health unlocked,so keep the faith I might make terrible jokes but I am 65 now although at times I feel like I am 95.WITH ALL MY LOVE TOBBY1428.[