Looking forward to this group. I am also in the Fibromyalgia group... can't think of the name right now... here on HealthUnlocked.
hello and thanks for making this group - Ramsays Disease
hello and thanks for making this group
Written by
budgiefriend
To view profiles and participate in discussions please or .
42 Replies
•
Hi, budgiefriend I am also on the fibro site think quite a few have both so we use more than one group for a wider experience of how symptoms can be coped with.
I have undiagnosed ME. I fit all the various criteria, but I have an issue with the local Rheumatology dept and ME Clinic, I won't go there, and my gp will not discuss it. So, for now, I am just asking for some investigation and treatment of my symptoms. So far, absolutely zero interest in dealing with me from my gp surgery. I had a trainee doctor there last year who tried, but she moved on to a permanent job elsehwere. Now I am worse than I even was then. Almost totally bed bound and really suffering. It's good if we can have a place to talk and help each other.
Passed around by doctors that only see one symptom for near five years from IBS onto heart and blood pressure until finally a young lass standing in for my doctor read me file and said ME/CFS so obvious once you see it why the others never seen the same lord only knows.
I believe I must have been ill a long time before I was told CFS always having sore throats and colds or flu that I never got well before the next arrived. My family were difficult because doctors said all tests are normal only I did not feel normal in fact I was frightened if this was how ok felt.
Sending Hugs xx
Yes, I know what you mean. I got ill just after marrying a man who became abusive after sitting in a NHS doctor's office with me while I explained how my previous doctor had done thorough testing and then made a Fibromyalgia diagnosis. The NHS doctor said, "I don't believe there is any such thing as Fibromyalgia."
The abuse from my husband, who I later realised had a serious personality disorder, got so bad, that I had to eventually flee to a women's refuge. While there, he divorced me on the grounds of desertion, and because he was a prominent person in the community the divorce was granted. He sold or refused to return to me most of my possessions. I was declared homeless and lost everything. I had a very successful teaching career before I became ill.
I have lost all my former friends, as a result of this illness, mostly believing that it is psychosomatic or too busy and disinterested to inform themselves. I am alone and mostly bed bound, so places like this are important to me to keep going.
I am lucky that I have been given ESA and DLA and Social Services funding for twice daily carer visits. But so far, even with a private carer company that I have to pay extra for every month, I can't get continuity in carers or the level of care provided. It is more stressful and exhausting having to deal with all this and the doctor who does not want to deal with me or visit me at home. I really haven't anyone who will advocate for me on a regular basis to see that I am looked after properly.
A very rough journey that has brought you into the present situation, the stress of all those things will have played a large part in progressing your illness.
I have found the isolation caused by not having the energy for any kind of social life, as nearly all energy goes on just the basics one of the hardest things.
Having to fight for basic levels of care in a country that is in the top eight of world economies, is a sign of the kind of society we live in. With cutbacks in social care funding and private care agencies paying staff minimum wage the situation is not improving, I have a friend that is in an old peoples home at forty six because that was all the care available in the area they live.
Hope been able to discuss things here will help bring some new friends that do understand because they are in the same lifeboat.
Thank you for so candidly sharing your story.
I hope you will find support here. 
Crazy_Horse
Providing support that I wish had been there when getting my own diagnosis is one of my reasons for wanting a community where we can talk and share experience. Shaping this community will be the opinions of the members - if you do not see what you need please ask you are the reason the community exists it will be nothing without you.
Thanks to all of you who wrote replies to me. I know that we have all had difficult times with this illness and the lack of compassion and appropriate care where we live. It is good to just say the truth and have people understand what you are talking about. The stigma and how it results in such abysmal treatment from most people is probably as bad as the illness itself. Maybe those of you who are lucky to have a partner or family member who is very close and loving, will feel a little better.
Things like you dont look ill are hard to understand, they may be well meaning but I am only seen during the best parts, like an iceberg the majority is unseen or much known about it.
The explanations of planning for payback after the least exertion is not a requirement for those who experience the same, this understanding that any not affected have trouble with is so clear that we do not think of fatigue as a little tired but know how crushing it can be.
We can be there for others because we understand with empathy not sympathy when we have the energy for anything beyond existing.
Get what your saying budgiefriend ill is enough without more pressure when we talk just say how it is not smile and say fine when it really isn't
Humbling experience reading what you guys have shared here it's widened my learning more than I can tell you all a strong reason for having this group.
thank you all guys for been here and sharing
Hi Budgiefriend and All,
I am also a member of the Fibroaction site. I find it a very helpful site. It is balanced with info, support and humor.
Budgiefriend, Quite a personal story. Stress makes these conditions worse, as you know. Sorry you went through so much stress. 
I am sorry you are mostly bedbound and am concerned. Is there a case manager available to you? Is there anyone to help to advocate for you?
The severity of these conditions often causes people to become bedbound, housebound. The bedbound scenario is especially concerning, as we only lose more and more strength and stamina.
Do your helpers make meals for you so you have adequate nourishment? It's tough to "get better," even a little bit, if we are not getting basic needs met.
I hope we can develop strong support for everyone. Informational support, emotional support, online social support, interactive support between healthy and inter-related forums here.
Admin here (BagEnd) has mentioned wanting to make this forum tailored to the needs of the members. That's an admirable goal. We have all been given the opportunity to help to shape this site into the type of forum we want and need. I feel some hope in BagEnd's approach.
Chad
Yes, I also am hopeful about this forum, but I must admit this is not my only source of emotional and mental support.
I have an excellent carer who comes sometimes. She is not available at all the times I need them. so I have other too. But she understands what it's like to be bed bound, to be dependent, to have had a hard life and been treated badly by family and some friends. She had a brain injury which was so severe that she was in need of care for about 10 years. That kind of person with a heart and who is also such a strong and conscientious worker, is like a golden ticket for me. She comes in and thinks about what makes me feel better, remembers how I like things so I don't have to try to think and answer questions or give instructions.
But I'm fighting hard to have the care company schedule most of my visits with her and my second favourite. I pay a large amount on top of the Social Services allowance because of these two excellent carers, and still I have to get really angry to get this company to do what they promised me they will do. Recently I battle and they just keep messing around with my schedule and carers. I've come almost to the point of quitting. And then they will fix it, only to mess it up again a few weeks later. sigh.
I also have some relationships with friends in a virtual world. I have been a resident of two virtual worlds... one for a few years and then moved to another smaller one about 2 years ago. Two very kind and interesting friends have made my life happy because they care how I feel, what is happening. Both have some life experience that has made them that way. They send emails, photos of them in RL, and it's like having distant relatives in a way. One regularly uses his holidays to visit his online friends, and he is coming to meet and visit me in the summer. I am looking forward to that. These are not romantic relationships in any way. Just nice people who have some common interests. We spend time laughing, building and furnishing homes, shopping to fix up our avatars, and making art.
It's an extension of my one bedroom flat and this bed where I spend most of my time. It's like a movie in that it takes you inside it and you feel a part of things by projecting into the scenes and the different way of life you encounter there. But virtual worlds are interactive. You can build things, upload things to it from elsewhere on your computer, such as art or designs for furniture or a tree or something. You can just sit and chat with someone or go to a club where there are new people to meet, go to a group that discusses things, etc. Lots of stuff going on.
I have found that a large proportion of the residents of virtual worlds are people who either have some disability, mental or physical, or are isolated or restricted in some way. Some care for a child who is disabled and needs their 24 hr attention. Others live in out of the way places and maybe they miss other creative minds such as writers, artists, deep thinkers... Some just have a boring job and like to do something interesting like learning to build 3D art projects or houses or something that you could never do in real life. And because many of them deal with social stigma or isolation or disabilities, they can often be very kind and generous to others.... understanding.
Of course there are horrible people just like in 'real life', but behind every avatar is a real human being with a mind and a heart and hopes and dreams. We can talk in voice chat or text chat, and nobody needs to reveal anything they don't want to reveal--even how old they are or how they look. This can be a bit worrisome until you learn to keep what you want to protect your privacy out of the conversation and gradually test someone's authenticity. And just like in 'real life' (These are real people behind the avatars, after all) you can be betrayed or abandoned. But I have been lucky. The few nasty individuals I've started friendships with showed their true colours after a time, and I just blocked them and moved on, after telling them why I was doing so.
I don't want to go on and on. I also have a couple of artist friends in the US. We skype, do facebook, etc. I skype with my children who are grown and in the US also. I read... I do digital painting. I keep up with current events. Some of these things take a lot of my energy and some I should restrict so I don't get too tired. It's hard to stop when I have so much I want to do and so much mental activity. I even do sudoku when I should be resting. Do any of you have this problem? I find that it stops me from getting too upset about the pain or my lack of ability to go outside and walk and run and drive a car, etc. But it also keeps me from stopping when I am too tired. I often fall asleep before I can switch off my computer. I will wake in a very uncomfortable position with the lights still on. Do any of you also do this?
Well enough about me.
Do some of the things I write about sound like your situation or do some sound totally different. We can discuss this and learn from each other. I feel that this forum gives us the opportunity to share some helpful things -- ways to cope with what is so difficult and also ways to be our real selves while still so limited by illness in many ways.
Quality in life thats something that gets me back up when I've been knocked down without the quality time all know how bad that is searching for a way forwards. With you in spirit budgiefriend a support network keeps us from falling. xx
Gentle hugs... I'm about to try to get some sleep. Had a rough day and now not too bad. Goodnight, everyone.
Gentle hugs some days Goodnight is what I am waiting for after breakfast LOL
know the feeling
About meals, I order frozen dinners from Wilshire Farm Foods. If you are a sort of foodie like I have been... sort of not a real foodie, but loving lots of ethnic foods, and high quality, it is a big step to go from cooking to frozen dinners that you can put in a microwave, then take the plastic off and eat straight out of the plastic tray. Some are quite nice, and others are pretty grim. I get the ones I like.
I also alternate between two supermarkets, because both have some salads and other veggie items I like. The frozen dinners do not have much veg in them, and I am trying hard to get my 5 a day. I have my carers make some sandwiches with plenty of rocket on them, or cook an omelette or things like that. I drink good quality juices and have my carers cut up some fruit for me or wash things like grapes.
I only get one hour in the am and half an hour in the pm, and they do the household cleaning, errands like mailing letters or getting the meter reading from the downstairs cupboard in the building... things like that. I have a budgie. They clean his cage and check to see his dishes are still clean. I do as much as I can, but at the moment, I am still struggling with doing too much.
I have some adaptations but need more. I am trying to convince Social Services OT who was not friendly/familiar with ME and what it's like to be house bound with it and the P.E.M., in particular. She did not understand at all why i want and need a certain type of bath lift that I believe they can get if they want to. It inflates, then you deflate it and thus are lowered into the water. Then you can inflate it again to bring you up to the top of the tub. This would enable me to take more than one bath a week, and to feel human again, as well as providing really good therapy for my muscles, which are always better with a warm/hot water soak. She said the same phrase over about three times.... "These are meant for people who can't physically get in the tub. Not for you to lie there and luxuriate." I was offended, but you know how it is... you don't want to reply in anger lest they prevent you getting other things. She ordered a 'bath board' which I would have to balance on and either let myself down into the bath from and then pull up onto, or else balance on and use the shower. My shower is mounted high on the wall. I can't stand reliably. I can't sit upright for any length of time, and this would be worse than useless as it would endanger me. So I just cancelled it when the company called to ask about coming out to install it. I am waiting to hear from them about the bath lift, but I don't think it's likely that I will get one.
This is so frustrating. Bathing is the one thing that makes me feel better, but the exertion of it, and especially of getting out of the tub from that position, causes the serious P.E.M. every time. I just about get over it after 4 or 5 days. Bathing once a week, keeps this cycle going. Bathing twice a week made me a lot worse overall. I wish so much that people understood.
Hi, budgiefriend I am glad you can share your experience I am sure that the problem solving approach will be an inspiration for those of us more able, that we do what we can while we are still able though not over stress with the payback that brings
Yes, there are some things I sure wish I'd done the year before I became housebound. But I've had a pretty good life and I am grateful that I did not get this illness when I was young. I have enough to keep me happy.
Reminds me of a John Lennon quote,
“When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy’. They told me I didn’t understand the assignment, and I told them they didn’t understand life.”
I think we can appreciate happy more than when fit and well, a silver lining in a dark cloud is taking time over savouring the better time, keeping them as a distraction when needed.
Hi Budgiefriend, I am sorry you are bedbound and so isolated. I am glad you have found friends online, including those meeting you in real life.
The stress of chronic misunderstandings, the chronic isolation can further exacerbate the condition.
This is a very challenging condition, with many potential co-existing conditions which add to the challenges.
I hope there is some very real help in the very near future.
KT_Rose
Yes, chronic misunderstandings, and also I guess based on misunderstandings and ignorance, the judgement and stigma. We do feel the stress when people don't treat us with the respect and dignity that everyone deserves. But most of us are good people, who just keep on trying and making our own way, since we are not getting the help we need. I have noticed in most of the online support groups that whenever someone feels they just can't go on, others immediately offer the kind of emotional support that makes a difference... not the kind of attempts to placate or offer bad advice that many others will give. It is those who have been through really difficult pain and distress who reach out even when they are also feeling poorly. I admire all of you.
OT operating a tight budget cheapest will cover met a need box ticked. Practical no austerity yes then we should be grateful or the help moans.
The thing is... IF I were given a £300 bath lift that enables me to take a bath more often, hydro and heat therapy, and be able to wash my own hair because I am down in the water where I can do it easily, they would save money on carer time, the NHS would save money on pain meds, doctor time, and pharmacist time... There is no common sense when budget cuts mean spending of as much or more somewhere else.
Now my GP has suggested that I consider moving to another surgery, as they don't want to visit me at home and don't have time to even assess my problems such as chest pains (angina?) and swollen glands (part of ME, but could be thyroid problems or something, who knows?). Maybe they want to hear something like... I have migraines or back pain, so they can write a prescription or send you to a consultant who will write one and most of the time neither will ever touch you or look at you.
Didn't doctors used to take blood pressure, listen to your chest, look in your ears and eyes, feel around your neck and throat, etc. every year or so and more often if you came in sick with a new problem? I have not had this kind of thing done in many years. Didn't they used to answer the question when you asked them 'What is this lump, and could it possibly be cancerous?'
When I ask questions I am hurried on to the end of the appointment and a prescription, usually for something I don't need or want that will not help me feel better or get better. I'm left not knowing what to do about whatever problem I asked about, or how to care for myself.
I don't understand why we are getting our health information from the internet and no personalised attention to our specific problems, such as orthostatic intolerance or shortness of breath. I am wondering if the rest of you have had similar 'care' from your GP. I feel I've been dumped and don't know where to turn. I have asked around from the different charities and support groups and nobody knows of any GP in my area who wants to treat an ME patient. What should I do?
The OT I had this time was not good. A few years back I had one who was very nice and helpful. I think I will not get the bath lift which is the main thing that would really help. I will have to try to save up for it myself.
Takes so much being a shadow of myself taking on more frightens me. Seeing a doctor I am so anxious not saying all I must before I am on empty, that I wont see them alone without my notebook when it still drives me nuts how much is not said.
I can only change one thing or I get lost in a maze nothing completed and what it was gone in the fog. If your the same budgiefriend choose one thing you can fix then feel good about yourself because little things mean a lot now.
Thanks for that. Yes, I get so down with all the various things that are wrong which I know for sure and all the ones that are not investigated which according to the experts in ME and the materials available on MEAssociation website, etc., we should be having investigated by our doctors. It's confusing because we don't know when to just let it go, and when to keep insisting. It COULD be nothing... but when you have symptoms which could be a stroke, or a treatable condition of some type, and the doctor doesn't care or listen, what sort of attitude should you take?
I recently tried adding an amount of electrolytes to my daily drinking water. I drink 3 liters a day. There is one ME info site (can't remember which) which had a calculation that you do to find out how much is the right amount. It was recommended that you do one liter per day with electrolytes in the equivalent amount of an electrolyte drink. I tried this for about 3 months. Then i got a lot of pain in my bladder. I went on antibiotics and it seemed to clear up, but came back within a few days. Another course, same result. Dr. would not prescribe more, and my urine sample came out showing a problem with the reading. They didn't even suggest doing another sample.
Then I read somewhere in all my research on various symptoms, that certain levels of potassium and magnesium can cause bladder problems. I stopped the electrolytes for a couple of weeks, and so far symptoms almost gone. Could be the electrolytes or could be something else... Hard to get up and go to the toilet when you are partially paralysed or completely exhausted to the point that you can't move any part of your body. Sometimes I will my arm, leg, head, to move and it won't. I know holding urine can also cause irritable bladder and even lead to infections.
We seem to need to do our own experimentation.
We, too often, must experiment for ourselves. We must advocate for ourselves, which can be very stressful and incomplete when we are so exhausted.
As for your bladder symptoms, please look into "interstitial cystitis." A very good doctor has educated me as to this condition. She says she sees it often in both male and female CFS/ME and FM cases. Many medications and foods can irritate this condition. You are very intelligent and can judge for yourself if you feel this may or may not play a part in your symptoms. We can try to observe the guidelines to see if bladder symptoms improve or not. You might mention to your doctor if you feel it may be a factor? Gentle hugs of support. KT_Rose
I think it probably is the problem, or could be. I was given a medication for irritable bladder or bladder spasms, after i insisted to the receptionist that I MUST talk to a doctor. I could not endure yet another day (after several days of constant bladder pain).
Now, I don't really have a doctor and got a letter from the gp I'd been assigned to strongly suggesting that I consider transferring to a different practice. It seems that if you press them to do something to help, they dismiss you. Unfortunately, the meds for the bladder pain made me horribly dry and thirsty so that no amount of water would quench my thirst, or anything else, either.
It's no use with these people. They only rely on a prescription and have no interest in doing tests or actually visiting the patient or understanding how the illness causes these complaints. We're often grouped in the 'impossible to deal with category' and once we have that Fibromyalgia or ME label, they don't want to do anything at all except repeat prescriptions.
I have raised the issue of the bladder problems and possible causes including interstitial cystitis, along with a number of other serious issues, and to that letter, which I sent because they do not want to discuss anything long enough to get anywhere, I got the short and straight answer that I should consider moving to a different practice. So much for being honest and getting directly to the point.
I also said in my letter that I believed I deserved to be told whether my doctor thinks I have a mental or psychologically based illness, or whether they think I am a malingerer. I got no answer to that question, which seems to me an answer in itself.
I really want to add that I have been respectful on every occasion and have hardly ever even asked the doctors for anything. I have only visited the surgery twice in the last 2 years, and have had a few home visits in the last year... like less than 8 or 9, mostly from the young trainee doctor who tried to help me and did a cervical smear, as well as blood tests, etc. Apart from that, not phoning them even for repeat prescriptions which I order online except when I had the bladder problems for which I needed antibiotics or urine test.
I am not a pest or someone who thinks they should drop everything and run to me, or that they should spend huge amounts of time on my case.
But honestly, when a doctor only comes out following 2 or 3 phone calls from my support worker asking them to review my pain medications, for example, this to me is an indication that they simply don't care.
My Social Services care manager wanted to go to one of their practice meetings. I am not clear as to why but assume that it was to find out where they are with my care and who is going to provide ongoing visits/attention to my needs. They only agreed after several phone calls from her, and then she said that the doctor assigned to me was not present and she was given no useful information.
I am asking around to see if anyone knows of a doctor in my area who will be interested in treating someone with Fibromyalgia and probable ME who is almost totally bedbound, and treating me as someone with a biomedical illness, i.e. treating various aspects in ways that can help and with the overall awareness of the cause of the problems, instead of treating each symptom as a separate issue.
We all know about the grab bag of various symptoms and connected issues there are in this disease. It's about time they acknowledged that and the main overarching illness so that we can get PROPER treatment and attention to how it all works together.
Hugs, slowmotion. Your phrase 'a shadow of myself' is so poignant. I am so sorry that you have lost your former ability to be all that you are. We do understand each other in that respect. This is a good safe place to say how we feel.
Understanding is so precious now I have no words for how grateful I am.
sending you another hug. Yes, we are in this thing together and that is better than being alone for sure!
Had a a bad day t a hug and understanding make this a good day. Hugs right back
slowmotion... I'm always available for hugs and smiles. Sending you both right now. Hope today was a better day!
Today is getting better slowly had 18hrs sleep only coming back alive. Hugs and smiles are coming through fog will be with you soon. xx
Good to hear you got enough sleep and feel a bit better!
Working on my smile
hi Budgiefriend, Thanks for sharing so much with us.
I am saddened by your story and your current situation.
I feel your story is very important. Your story helps people to understand more about the many challenges.
What happens when someone is too ill to go out to see the doctor?
What happens when a patients asks questions about diagnoses and care - and is then met with a letter suggesting she maybe go elsewhere for care?
It's wrong.
I know this happens because I have been in your position. Some doctors do not know what to do if any case becomes complicated. Many feel "interstitial cystitis," alone, is too complicated, not to mention ME.
I am sorry you have been so let down.
If you are homebound, you haven't many treatment options.
Most systems are not prepared to deal with homebound patients.
Yet, neither are these systems prepared to keep any patients in hospital, including many post-surgical patients these days.
I admire your willingness to share about your own experiences.
Thank you so very much!
My heart goes out to you.
In Support,
Crazy_Horse
Thanks for your understanding and support, ~Crazy Horse. I feel that we need to be open and honest. It makes me feel sick inside to have doctors skirting around the issue, looking away from my eyes when I ask a question and giving no answer, or pretending that they want to help, but not even suggesting that we do a urine test. It really feels like I've been discarded and they feel I have no worth. They seem to feel no duty of care or sense of responsibility... even for problems that could arise from their neglect and lack of interest.
Knowing that I am not alone does help. It's not so much the old 'Misery loves company' as it is a compassionate and caring community of people who understand. It makes me sad when people with ME start to fight with each other about various issues. We have such a battle to preserve our dignity and get the care we deserve. We do not need to fight battles amongst ourselves.
I hope in this forum we will not have people fighting or being rude to each other. We need to do all we can to suggest ways to deal with problems and to work together to make things better, if only to send virtual hugs and smiles.
Hi Budgiefriend, I want to again thank you for openly sharing your story. You put forth some real challenges to the medical system, challenges which need resolution. You are helping to keep it "real" for all of us. I know I have seen so much and have had so much pain for so long, I can detach a bit, out of necessity. I somehow see the truth more clearly as I observe another in pain. I sometimes need truth like yours to ground me back into some of the harsh realities, as we all share here. I have seen your post in the Fibro forum and I hope you will obtain some helpful feedback there. I do think of you daily and offer positive, supportive mojo your way. I wish I could do more. C_H
That is so very kind of you to think of me. I am just trying to get to one thing at a time. It is wearing me out with stress and mental exertion as I read a lot and try to make some plans. But I hope it will soon start to move forward. And I also think of you and the others here. We are a circle of kindness and trust and understanding for each other. That is a very nice thing to have.
Not what you're looking for?
You may also like...
Home Care
Advocating for services for severe M.E on 8th of August Helen Brownlie of the 25% ME Group...
NICE CG53
NICE guideline will be reviewed despite advice fro technical expert group that no review was...
Helpful guides for us and our practitioners?
Gentle hello, how are we today?
I'm just wondering which guides/resources we've come across are...
Update on Rituximab
A proportion of the test group have seen lasting improvement, so not a cure all but B cell...
Please ask your MP to attend the APPG on ME Wed May 11th
If you have not already done so please ask your local MP to attend the All-Party Parliamentary...
