I imagine I know what the advice will be if anyone has the time, energy or motivation to reply. Feel so unpleasant physically though and upset, any moral support or helpful advice will be so welcome.
Yesterday some very old friends called on their way back from holiday. I hadn’t seen them for 5 years as they live some distance away and I guess partly me not encouraging meeting up.
Anyway was a bit apprehensive but it went well and they stayed for 3 1/2 hours. I say “ went well” but my natural instinct is to be quite extrovert which I’m now very wary about.. adrenalising ...so although I tried to not do, expect I did.
Have felt awful since as you will know. Don’t know where to put myself physically and also very upset. Am so desperate to be understood and did send my friend a long email explaining about ME and she’d seemed sympathetic. However, although I said abit about it at the start I know I seemed “ normal” to them and so it would sound ludicrous to them if I told them how I am now.
My dilemmas are:
1. Do I follow this up with an email saying how the visit left me and that I should have asked them to only stay for 2 hours at the start? Then it paves the way for the future.
2. Any advice on accepting how horrible I feel now and the sadness again this illness causes?
I will feel better if I do email as I am desperate to be understood, honest etc but.. I know my friend previously has implied I’m abit health obsessed and it’s probably fuelling that. But.... isn’t being true to myself more important?
Oh dear me. As many of you I hope will understand, this goes way beyond yesterday’s visit but is the whole dilemma I find myself in constantly. Know being “ upfront” always to people is the honest way but very hard as I hate sounding “ me me me!” An irony really when I have ME!!!
Any thoughts very welcome!
Thank you
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Ps following on from my post above.... have decided to email my friend and say how I feel now and that I should’ve stated at the outset how long I could chat for. Sounds unwelcoming but how else am I going to try and accept and take control of the condition!
Pps I don’t know if anyone read my post and ps? My husband kindly sent a charming email saying lots of nice things about seeing them etc etc but it had left me feeling exhausted etc. Our fault as I should have followed the advice of the ME OT I have seen and said at start how long I could chat for.
Anyway she’s replied and said she thinks I should be in antidepressants/ anxiety medication!
I feel so upset, hurt ... as I’ve had this said to me so often until I got the ME diagnosis. It was so cathartic to get the diagnosis yet I struggled as well with it. Yes am sure I am anxious but to think it’s just that is to completely misunderstand the condition.
I may add as she is technically my oldest friend from childhood I had explained all this in an email afew times.
I sound a right old moaning so and so I know !!! So do please forgive me. It’s such a sensitive area for me as ..... sorry sound big headed... feel I do give alot of understanding, empathy to family and a couple of friends, including this one, albeit on email. But... I need it now and due to the nature of the condition people seem incapable of listening to what I say!! My granddaughter says... only nanny understands me!
Guess this forum is to off load though?
Any moral support would be so appreciated... feel so upset 😭!
Did you send the the scans of ME sufferers brains with lesions in them. That was the first time i felt i could point at something and say had a "real" condition and it meant a lot.
I empathize with the situation alot.
One of my best old friends, a gp of all things, visited back from canada with her 2 kids. The day wasnt the best as id had a minor toe op the day prior and was wiped. I thought they were just staying for a cuppa and cake for like 2 hours but they were expecting to be entertsined with 2 lively kids all afternoon amd be fed dinner. At some point i had to sneak off and lie down and then they came and got me complaining their kids blood sugar had gone too low as they needed feeding promptly. It was a nightmare. Id thought of all people they would understand. So disappointing. They've not been in touch since and nor have I. Like you I mulled over a letter (an apologetic one) but i gave up in the end due to lacking words.
Im not sure it is even possible to get most healthy people past their prejudices to understand. I bought my hubby a book on what its like and he wont read it!
Ive found a local me sufferers group and hope to reduce my sense of isolation through that.
Not sure any of this helps, but you are most definitely not alone!
Yes, Im increasingly feeling like that as time wears on. Month 13 now. Definitely having a more desperate need for validation, not to be dismissed as a timewaster or hypochondriac or depressive or fantasist by GPs as I felt I was today. When I had the tumor and the op and the meningitis people were sympathetic, but then you don't get better, and don't get better and the novelty wears off.
You want to feel that people think you're not making it up, aren't a fraud.
I think it must be a natural reaction to this bizarre situation of looking ok but absolutely not being. You almost end up wanting to look really sick just to be believed . It does totally mess with your head.
Oh “ get that” about looking ok. First thing people often say isn’t it!
Understand your deep need for validation. A GP first suggested it may be ME 3 years ago but ... long story ... didn’t get validation until last November when I saw an ME OT after first seeing a consultant physician for the ME service who thought I hadn’t got it but referred me to an ME OT just for one session to discuss my anxiety!! Well the OT was brilliant ... much better than consultant who was a general hospital consultant and did ( don’t think he does now) only afew hours a month.
She said ... I’m validating it now and thought I’ve had it for many years or elements of it.
I imagine you haven’t been able to see an ME OT as know it varies in different areas, but the whole 1st visit ( have seen her 3 times since November) was the!!!! most cathartic experience of my whole life. Like it explained so much over the years and I’m 63!
Although it was so enlightening and emotionally moving getting this validation, which was crucial, it also has made me realise how much I’ve got to learn , change my behaviour / operating mode to manage the condition and get the best out of life. Seems the hardest thing imaginable!
To help me accept it, I’ve just joined the ME association which has excellent magazines and free leaflets.
Ps I have a lung condition called Bronchiectasis and although the respiratory consultant is excellent , when I first mentioned a GP had suggested I had ME he was sarcastic! Also not convinced my current GP believes it either! X
I get a specialist gp assessment in September, if diagnosed thereafter you see an OT I believe so sounds like the same set up. I have found had a good pain physio so been told a little about pacing etc so practically i don't know how much it may help, in a way a lot of me is hoping they dont and say its still 'just' the meningitis. Im 43. I don't seem to have trouble with them believing its ME but none of them believe its the meningitis despite reasearch on the after effrcts from the meningitis that virtually replicates what Ive been through to a tee. Thought the description is almost the same as ME in many ways so two sides of the same thing ultimately. I just need to stop thinking about it all for a bit.
Really glad the OT and joining the association is helping xx
Oh Starry again I SO understand how all the confusion can arise, how in a way you didn’t want the ME diagnosis and reservations about an OT helping!
I feel and have felt all that and still do. Also the constant thinking about it all.
I still struggle with accepting .. is it ME, did I give correct info to OT etc. Still feels a confused mess and am constantly wanting definite answers, labels.
For me.... had a lifetime of being prone to fatigue, insomnia for years felt I had a strange recurring virus with no obvious symptoms ( still not got answers on that), had awful menopause symptoms for 8 years and still ongoing, then Bronchiectasis diagnosis 5 years ago and awful infections.
My husband especially had said for years I should go to counselling for my mental state. Yes I have got issues from my childhood (another story) and am a perfectionist type. Anyway had the 6 free sessions with NHS 4 years ago. What came out was my main problems were tiredness and boom and bust ( 1st time had heard of that). Realised now she was picking up on ME type symptoms. Also had afew private psychotherapy problems about childhood which unearthed a lot but hadn’t got energy to continue.
Anyway it was still all put down to anxiety, my personality by family and husband. My husband and I have had a very difficult time as he kept on thinking I needed more therapy of whatever type. The ME diagnosis in November was helpful in that it made him realise it wasn’t just my mind!! Then we took our caravan to Spain for afew weeks in May , had all sorts of plans but it didn’t work out at all. I had crash after crash all the time and finally .... we both realised it must be ME. Since then he has been SO different. He could see I started off relaxed and it was a real physical thing with of course emotional side ( constantly in tears ).
So where does this leave me? Still confused as like you aren’t keen on the ME label but also know that the evidence is there. The OT also said I had all the criteria for getting it..... issues from childhood, perfectionist, immunity, finally Bronchiectasis which I know has “ done it plus more I have forgotten.
Yet although I initially I thought ... well no one can think it’s anxiety now. I now think maybe anxiety would be easier. I could then “ push through” without constant worry over “ payback” by overdoing it in every way!
The OT was very helpful though.... lots of info, don’t blame yourself , too much to mention here. She was extremely supportive and had heard everything I said. Problem is I could do with living with here for daily advice not the odd session 😂!
It is such a long tiring journey!!! On brighter moments I feel I will be such a wiser better person , appreciate the important things in life more. In darker moments have felt in despair.
Here’s hoping for everyone on here that the brighter moments win and the journey gets easier.
Lots of curious historic parallels there, always a low energy person, childhood trauma, perfectionist tendencies (though im over that) , stress/anxiety and depression at times.
I started with a severe endo diagnosis and i remember when the penny drooped with my busband after he joined one particular specialist consultant session and he suddenly realised physically the pain and fatigue id been dealing with, hes been so much more supportive since. Glad your husband has finally realised its a pbysical thing too xx
Throwing you a handful of stardust your way to sprinkle into any dark corners.
Here catch
💫💫💫
I think it is hard for people to understand a condition that is relentless.
Some of us are wired to help, and will offer advise.
I have guilt around looking fine but being unable to enter into the life that is shouting to be engaged with. And helping those that need my support,
Basically it's a sod. Mostly I
Don't apologise
Don't explain
Why waste energy. The condition dictates that it won't be understood.
If I slip and try to explain, I always kick myself after, and wish that I hadn't. Because it always leaves me feeling worthless. (Quick get the CBT prompt sheet out!). Don't work though. I have too much time to mull over things.
I lay out a plan for me that I think will work. (Sometime I get carried away) but take the hit but at least I have memories to keep me warm. And the days are soooooooooo long, as pain and M.E. robs us of so much.
In a way for me I have come to the conclusion that I feel inadequate and if others think about me at all once I am out of sight it will only be a fleeting thought. And will be filling thier life up with all the things I want to do. And thier own troubles.
Make life easy.
Easier said than done without huge amount of guilt and feelings of inadequacy.
My mantra is
It is what it is
Even I can't understand why I can't force myself to be the person
Thank you SO much for taking the time to send me such a truly inspirational and oh so absolutely “ hit the nail on the head” message!!
I agree totally and utterly with all you have said. Apart from trying to manage and deal with the condition it would be wonderful if you could do one explanation to folk, they would listen and then “ get it!!” Not to be though 🙁.
Although I have had elements of ME for years I also have a lung condition called Bronchiectasis which is also difficult to manage so diagnosis of ME got confused with lung infections. Only got the official ME diagnosis in November so still fairly new to the whole business ... managing, experimenting limits ( or not if bad!) but the dealing with people... guilt, feelings of inadequacy, utter frustration if explaining it then looking ok and them not understanding at all!!
Will take time I know but life is short! Am 63 and retired 5 years ago due to Bronchiectasis so am fortunate that I don’t work. But have 3 grandchildren who live away, the youngest who’s nearly 3 have hardly seen due to health. So i am working hard ( contradiction with ME!!) at knowing where I am at!!
Have looked at your posts which are full of such wisdom so you’ve obviously thought and “ worked !” hard at it all!
Totally understand how you feel, I go through this every time I meet up with people. All the feelings, all the questions, what is the best thing to do. Mixing with "normals" drags up so many issues. A big part of the problem for me is post adrenaline depression (PAD). I'm not saying ordinary depression, I am saying a very specific impact that happens after releasing a lot of adrenaline, which we do, as you say, as a last form of energy supply. It has been written about by sports people. Did you feel happy with the visit for a short time afterwards and then suddenly feel flat and then start feeling bad about it? If so it might be the same for you.
Recognizing that PAD is something that happens has really helped me deal with it. It doesn't change how I feel but I am now better at ignoring all the emotions it stirs up and just waiting to get back on an even keel. Usually 2-3 days. It is a horrible thing to go through because it makes you feel so negative about yourself and everyone else. I tell myself "it will pass, be kind to yourself and just wait" I get my daughter to tell me this too as it really helps hearing it from someone else. I also eat chocolate, lots of chocolate.
My only advice for future visits is to have a plan and stick to it. I set an alarm as it makes it easier to have the "I need to rest" conversation. I went to a family party recently and asked my Aunt (in advance) if I could use a bedroom to rest while I was there. I disappeared every half an hour and rested for 40 minutes. It was the best party ever for me. The family lived at their pace and I lived at mine.
Thank you so so much for the detailed reply. I can feel so isolated as I’m sure lots do on here as I don’t personally have contact with anyone who has ME and knowing me .. if I did... I’d be comparing myself too much to them!!
Yes yes. Although I did start to flag during visit the lowness did come abit later. So thanks fir all the advice.... big help. Especially re chocolate 🍫!!!
Also guidance re future visits etc. Does take a lot of courage but something I must start to do I know.
My next “ big thing “ is a nephews wedding hours from home. Big challenge!!
All seems to be one big learning curve of managing but the emotional impact when “ normals” are involved is probably one of the worst aspects!
Hope you can come up with a plan for the wedding. Will you have a car? I try to find a nice secluded spot in the car park for mine so I can retreat to it for rest breaks - stocked with chocolate of course
Just replied and lost it so hope it doesn’t post twice!
Anyway thank you so much for your kind interest and advice Callipet.. so welcome!
The wedding is 5 1/2 hours away but am lucky enough to have a very well equipped nice caravan so always take that if stay anywhere. Actual wedding night we are staying in same hotel as other guests which is s 10 min walk away so car will be parked there. Already decided to go back to room and miss evening disco.
Yes agree re the irony of it being hard work when we don’t need hard work! Other irony is that when we feel at our weakest and most vulnerable then we need to feel the strongest inside!
I try to tell myself that if I get to handle all this then ultimately I will have greater inner strength. 🤞 here’s hoping!
I have been considering caravan/camper for years. I feel I would be able to "snail" my way towards interesting places and get out a bit more. It sounds as if you are going to take a few days around the wedding to get there and rest up, such a good way to do it.
Could you also sneak rests throughout the day, whenever there is a bit of a lull off to your room for a quick re-charge. The photographs can go on for ages and there is usually a really long bit while all the guests arrive at the reception. I think there could be at least an hours rest for you there. Maybe someone could phone you when it was time to get back to the group. Ask someone reliable though, if I asked my brother to do this he would forget and I would miss the whole thing.
With all my needs a caravan is perfect as can carry everything and easier to rest. Having said that, I am much more prone to crashes than I am at home in my own peaceful routine.
Have you got someone that could tow a caravan or drive a camper van for you? X
Ok. You can get quite small ones which may be best?
On an more humorous / vain note.... other complication with resting at wedding is contact lenses. Only wear them if a special event ( dry eyes) but also due to resting you can’t close your eyes. Vanity will rule at wedding though so will have to rest with eyes 👀 open!! Despite all vanity can still win.... occasionally ! 😂😂 x
Never heard of PAD shall check it out. Agree anything that helps make sense of the beast can only be helpful. And more important validating the fact it's not just me being a wimp.
Have just been reading your thread on mobile accommodation. Have camper called Freeda. Freedom for you awaits. Often pulled over on lay-bys to crash on even short journeys.(I dont even do the driving). Have camper van cat that sits on knee looking out or falling asleep. Always keep it ready to go with everything but grub. To grab and go.
If in this country bear in mind height limitations on public car parks. And that once on site you are reliant on it to explore. As the condition seems to have thrown more restrictions over years. Often to be seen within short distance of home, but change of view always a tonic, amazing how much there is to discover on door step. Still trying to accept the fact, can no longer walk far with out collapsing on convient bench. I think someone should develop app highlighting benches. And comfy places to lay. Local museum good one for me. On chatting terms now with staff. Am consider investing in tshirt. Saying Please ignore just resting.
Hi winter2013. I think visits are particularly challenging. I'm not surprised you are feeling so upset - you are now in a period of relapse following the overexertion of the visit. I think, too, that every one of us with M.E. or conditions of which there is little general awareness or knowledge wishes we would be understood. I am with nedd on this one, I think trying to 'get through' to people, beyond their gaining a basic understand, is probably a waste of time in the majority of cases; irrespective of how well one knows the other person. How can M.E. really be explained to someone who doesn't have it? It is so far outside anything those in 'normal' health experience, even outside that which those who have other chronic conditions likely experience in most cases. I would liken it to living in a parallel universe - at first glance things can look pretty much the same, but spend any time there and it is anything but normal/the same. And this is the task facing anyone wanting to try to explain things to others. I have tried, and largely failed, to communicate how things are for me to my father. Now, he's an intelligent man. He's a well-educated man. He used to manage a large team. So you'd think he would, after 13 years, have a good grasp of at least the basics. But no. He simply thinks I get 'very tired and you need to sleep.' Oh! If only I could sleep! So, 13 years of wasted breath and added stress when he visits as I get so wound up. It's incredibly hurtful. But, I am slowly starting to take onboard the very sound advice given in the film Frozen - 'Let It Go'! Really, I think it is the only way. Your friend may not understand more fully and your friendship may have to change, which may be so hard, but you need to hold your head up and have faith in and respect for yourself. You have no need to 'apologise' for yourself.
I’m just so so glad I posted on this subject as I get absolutely and totally the perfect answers like you have just sent me and from nedd and Callipet.
It’s so very comforting to know that you all feel the same as me!
It gets me unbelievably wound up explaining to people and they can’t understand but of course you’ve explained it beautifully. Have wasted enormous amounts of energy doing so, adrenalised, got so upset, frustrated etc
I still I’m in a learning curve with it all.... haven’t yet stepped over the threshold into knowing my limitations, accepting the condition and ...... accepting that others can’t seem to get it!!!
I know developing inner strength and looking after yourself as an absolute priority is crucial rather than worrying what others do or don’t think is key. One thing knowing but putting it into practice takes practice!
Hi winter2013, I am catching up on posts and just wanted to say that I hear your frustration. I am 21 yrs post diagnosis now and accept that some friends will never understand how ME affects us on a daily basis. Or how carefully we have to manage activities and rest. I no longer feel I have to expend energy explaining my ME and say words to the effect that it would be lovely to see them but I tire easily and will/ may need to rest for 30mins, 1, 2 hours after an hour (or more/less). You may find this difficult to begin with but you really only need to a brief explanation. Most people who function as 'normal' healthy people cannot grasp the limitations of ME.
I know it can be very difficult but please try not to expend energy explaining ME and how it affects you if explanations are falling on 'deaf' ears. You owe it to yourself to use energy on 'activities' you enjoy. Likewise, energy usef on personal frustrations can be saved for 'activities' you enjoy.
Thank you so much Lottie and what you say is absolutely the best possible advice!! My head knows it but my heart keeps on reaching out with a passion to be understood!
However, I need to listen this my head and learn!!!! .... key word ... to not waste energy explaining.
One of many challenges I need to take on as well as accepting the limitations better myself.. but am maybe making some improvement here (?) , learning about my limitations more and generally being more focussed on what’s best for me.
Sounds simple but as we all know isn’t!!
Well done to you for achieving this and lots of good luck for the future! Xx
Thank you for your kind words winter2013 . It does take time and practise learning to save energy wherever possible. We are not used to looking after ourselves but are very good at looking after everyone else. It is as if we have to unlearn all we have learned and put ourselves first. We are so not used to doing that. Try not to be too hard on yourself, love yourself and try to give your body what it needs. You will learn to live with your ME in time, give yourself that time.
What a perfect reply Lottie. Agree with all you say!!
Yes .. can put family first ( or grandchildren as daughters grown up) or if I don’t then feel all muddled and stressed.
A big steep learning curve or work in progress.
Thank you again for taking time to send such brilliant advice and supportive kindness.
Hope someone had given that to you over the years?!
Xxx
I have been so fortunate to have had support from the original ME centre in Romford Hospital (early 2000, three week in-patient stay) various O.T's and an excellent clinical psychologist with in-depth knowledge of ME. all giving roughly the same message about the importance of rest and activity, banking regular rest periods (away from any stimulation), grading all activity e.g TV, talking, writing etc as high, medium or low and ensuring any activity stops before symptoms are felt. So each day is activity eg 10 mins, rest 30 mins, activity 10 mins or 15 mins, rest 30 mins and so on.
It is a difficult regime to follow especially when life gets in the way and life does get in the way. The best I can say is that you try and stop any activity before you are totally depleted but preferably before you feel symptoms.
I was always told that rest, without any stimulation means lying down in a comfortable position (limbs supported where necessary), eye mask to keep out light or use a darkened room, use ear plugs unless listening to music/guided relaxation or meditation. Remember to set an alarm to wake yourself up.
Please remember not to beat yourself up if you do not keep to your activity/rest periods. Try not to set unrealistic goals. I still have at least two days a week where I do not leave the house. I lead a very quiet life but can meet friends for coffee and walk for a short time.
Wishing you well, please remember to be kind to yourself, love Lottie x
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