Feeling rubbish! Help please.

First of all, have a hug.

I'm quite stressed at the moment. I find setting myself very small challenges, some of which are daily repeats, helps a little. I think of them as stabilising (or grounding) actions.

Hope you find something that helps.

Cossy your feelings are quite understandable; don't feel guilty (though I know that's easier said than done!) I've had ME/CFS for about 20 years and I think it being an invisible illness makes it harder as we and other people can feel we just need to pull ourselves together ( horrible expression). It is (or can be) extremely debilitating and I'm so glad you are getting good support from your doctor. Very good luck with all the remedies you are trying. Xxx

I'm sorry to hear about your health problems Cossy I think "getting a grip" etc is not the right way to approach this. You have your diagnoses now you have to look at strategies for dealing with them. You are already getting good support from your GP, a mental health nurse will be able to advise you about coping mechanisms as well. There will also be support groups out there with others dealing with the same conditions, talk to them and help each other. I hope things improve for you soon.

I've, also, had M.E. for 20 odd years. You are feeling angry and bitter as you are grieving the life that you would have had if not for this dreadful disease. This is entirely normal, we all go through it and it makes everything seem worse. Good luck with your M.E. journey. hugs

Some symptoms of long covid are similar to chronic fatigue/m.e. The significant rise in people suffering will hopefully lead to research and answers soon for you.

There are ME support groups: I met up with some members on a trip to Edinburgh a few years ago. I learned a lot about ME by speaking to them.

So little is understood about ME even now - researchers are working hard at last.

My niece found it helpful to have a small 'to do today' list. She put three things on it, such as 'find a yellow flower' 'spot a robin' or 'see what I can see in the clouds'. Most days she could tick at least 2 off and felt that she had achieved something with her day. Gradually she began to feel more positive.
Eventually she ran out of ideas so she involved the whole family in making her list; we would take it in turns. Gchn were the most inventive: find a stick and float it in a puddle, how many different greens can you see from your window?

Her mum collected the lists and wrote all the ideas on lollipop sticks. Now there is a ready resource for when she feels she needs it; she just picks a stick at random from the jam jar.

She still goes up and down but took tiny steps.

Oh Cossy - have a free hug! Wouldn't it be great if it was 'just pull yourself together'... Clearly you are asking more of yourself than you have got to give. We all have different limits and 'drains'. Suggestions - try to be a bit selfish, read anything about how athletes/healthy/confident people live - try out any ideas that seem worth a go.

lixy

So little is understood about ME even now - researchers are working hard at last.

My niece found it helpful to have a small 'to do today' list. She put three things on it, such as 'find a yellow flower' 'spot a robin' or 'see what I can see in the clouds'. Most days she could tick at least 2 off and felt that she had achieved something with her day. Gradually she began to feel more positive.
Eventually she ran out of ideas so she involved the whole family in making her list; we would take it in turns. Gchn were the most inventive: find a stick and float it in a puddle, how many different greens can you see from your window?

Her mum collected the lists and wrote all the ideas on lollipop sticks. Now there is a ready resource for when she feels she needs it; she just picks a stick at random from the jam jar.

She still goes up and down but took tiny steps.

I love this. Thank you.

And, a massive huge thank you to all who’ve responded. You’ve made my day so much brighter and some great suggestions.

I wish you all a bright new week filled with sunshine, even it’s it not literally!

Cossy, ME is such a debilitating condition and my heart goes out to you. I have no experience of ME but do know how difficult it must be to live with, it is not fully understood but thankfully the powers that be seem to be working on research combat it. You have had some comforting advice here and I sincerely hope that goes some way to ensuring you feel happier. It must be awful to feel so demoralized and feel ' like rubbish' Please know that people here are ' with you ' and sending strength and positive thoughts your way. 💐💐

Hi Cossy, Just be kind to yourself. Gentle steps. Pace yourself and most importantly if you feel you can't do something then just don't.
I hope you have supportive family and friends around you.

I have Fibromyalgia and other chronic health issues bought on by intense chemo and have had it about the same length of time. Any stress overloads me and i understand how you feel and it feels truly horrid. Sending a hug from me . I try to cope with things on a daily basis and i let those close to me know how i’m feeling as sometimes I know i try to pretend i’m ok as I know others are dealing with their own battles. I’m here if you ever want to message me and chat or via this forum. Afternoons and evenings i’m definitely not at my best but will always reply as soon as able. Maybe we could set up a sub forum on this

I have also had ME/CFS/Fibromyalgia for over 20 yrs now due to chronic stress and anxiety and PTSD. My advice is to pace yourself, listen to your body, when you feel tired -STOP! and acceptance is the key, I grieved for ages about the life and good health I USED to have, taking all that energy and mobility for granted, once I accepted this is the new me, the weight of anxiety just lifted, this is my life now and I do the best I can, mindfulness really helped with that , being in the here and now, focus on the positives and little wins every day eg today I managed to load the dishwasher YAY! we are often our own worst enemy. I have also found having a routine really helps when housebound 24/7, so get up same time every day, meals same time, bed time etc etc it helps keep a healthy balance and state of mind.

I think you have done so well to have coped with all of these illnesses whilst the challenges of life never end, and you've worked through it until retirement.
AC are a worry, it's not being able to sort their problem out as we did when they were small I find difficult, no matter how old they get, they'll always be your children.
Be kinder to yourself, no guilt.
Good you have seen your doctor and they are being helpful, go ahead with anything they suggest.
Wish I could be more helpful, wishing you the best x

Cossy be kind to yourself. In 1980 I was housebound and often bedbound for 3 months. The GP turned up every Monday morning (those were the days!) and took more blood and told me the results of the previous tests were all negative. Eventually a friend rang and suggested acupuncture. I'd hardly even heard of it. I had one session and walked out feeling better. Looking back I think it was M.E./CFS. It was the start of my exploration of complementary therapies. They all work. Good luck hugs

Thank you all so much. Especially those who speak of grieving the life I used to have! Really struck a note! I’m lucky, as I do having amazingly supportive friends, and somewhat supportive family (depending on their “mood”!)

Thanks for the advice and support and thank you for making me feel less useless!

Good advice from everyone,hope things improve,be kind to yourself 💐💐💐💐💐

In 1962 i was diagnosed by my doctor with fibrositis , now called fibromyalgia . The pains were not to bad then . In 1964 I emigrated to Australia, Darwin NT , tropical climate which made the fibro worse , a nurse from the hospital visited me at home for weekly light massage , which helped . Two years later moved to Perth WA , and was advised to go to Hydrotherapy , warm water pool , twice a week, what a difference that made and also a massage once a fortnight , was very cheap back then . I was also advised to cut down on meat , and eat pleny of veg and non acid fruit , apples , pears, bananas, and light exercise . Fibro was very mild and only has a few minor flre ups . Then in 2001 moved back to UK to look after husbands father , and decided to stay in England . I was lucky as they had a hydrotherapy pool in that area and visited there once a week £5.00 a visit , stuck by my healthy eating all organic , but two years later the hydrotherapy pool shut down . The cold weather brought my fibro back , visited a GP and all they could recommend were pain meds or anti depressant meds , no way was i taking them . So found a good massage therapist who works lightly on the body , also started taking granovita an organic flaxeed oil, from sainsbury's £5 .42 a bottle , you add about a tablespoon to your cearel or on food every day , nice flavour , and it helps . Hope you find some relief , as when it flares up the pain is horrible .

Zen82

Thanks x I too have a great massage therapist and when the sun is shining and the weather is warm (not too hot) I feel so much better.

I’ve suffered with anxiety issues for most of my life. My lovely Mum always told me to write it all down . It’s very cathartic . I still do it either as my daily diary or writing stories of my childhood and my family. Paintings of memories of events and places can operate in a similar manor. It doesn’t matter if you think that you can’t draw. ( Beryl Cook started late). When I’m stressed a or feeling unwell / ( I have PPS) I write or paint. I think it must have something to do with neural pathways. Wishing you well. Hugs. Xxx

Hi Cossy, my son had ME between the ages of 10 - 14. He was very angry and anxious because nobody could tell him when, or if, he would get better. He managed his energy so that he was able to do some things he really wanted to do. If he overdid things, it was like a battery going flat - there was no chance of him powering his way through things, he could only do so much before his energy went. He managed his energy by ‘pacing’, where you learn to stop just before the energy runs out. Of course, it’s very difficult to insist on resting if people around you want you to be fit and active!

I’ve had a lot of illnesses and hospital admissions over the last ten years, and I now have many of the symptoms of fibromyalgia, though I haven’t yet been able to get a diagnosis. The rheumatologist I saw diagnosed me as having ‘chronic pain disorder’, which doesn’t really mean anything! I know, from looking after my son, that if I can’t summon up the energy to do things, I have to say ‘No’ to them. The brain fog has been the most difficult thing to deal with. At one point I had to get a memory test from the GP, because I kept mixing up dates and times, and getting the day wrong.

So I don’t really have any helpful tips, except try to be as compassionate to yourself as you would be to anyone else who had a life-changing condition. Get all the help you can - Occupatioal Health came to look at the house and put in an extra stair rail, which has made it much easier to go up and down the stairs. I’ve learnt to sit down as soon as I get tired of I’m cooking - even a short rest can get me to the end of what I’m doing!

there is an excellent book 'how to be sick' by toni bernhard a law professor who contracted M.E it comes from a buddhist perspective but i see little wrong with self compassion.

You might like to join the Facebook page Tell Me About Your Pain - A Mind Body PRT based approach to healing. Fibromyalgia is often mentioned on there. You may find it interesting and it’s free.
I’d also recommend the book ‘The Way Out’ by Alan Gordon. You can buy a hard copy or listen to it on Amazon audible.
Both of the above have helped me greatly with my chronic pain and anxiety.

Sending sympathy and a hug. You seem to be getting some support and help not sure what else you can do. Rest is important but with some form of exercise and fresh air. Try a short walk daily to start with - and if you can spend time in the garden. Keep in touch with friends/ family - short meetings/ calls so you don't overtire yourself to avoid loneliness. Take care