I think we all may have felt like this at some point living with Fibro.
However, 'the prognosis for people with Fibro today is better than ever.
Huge strides have been made in understanding of the condition in recent years and research continues to be carried out to push this understanding forward further and develop more and more effective treatments for the condition'
I feel that people with family, friends, carers, and intelligent, interested doctors can do well and come through this... maybe even get better. I have none of those.
I am bedbound most of the time. I have not seen my doctor in the last 9 months. When I last saw her she implied that some of my worst symptoms were caused by psychological problems. She blanked me when I told her that I pass out from the pain or lie in a semi-conscious state unable to move sometimes for hours. I have only after several years of having these symptoms found them on a list of M.E. symptoms. Why did no one tell me this when I asked? Why does my doctor say nothing when I say I believe that I may have M.E. and ask to be tested or assessed for it? I am going to find a new doctor.
I got DLA at the lowest rate, but the trauma and physical exertion of going to the tribunal hearing and being hounded by them to say that what I was telling them was not actually true wore me out and it took many months to even get back to where I am now. I used the back pay to buy a laptop so I can have friends online, talking to them from my bed. This has literally kept me alive.
With that extra money, I can now pay for someone to come and clean my flat. This makes life more bearable than living in a filthy place I cannot clean. Someone to take out my rubbish which used to pile up for weeks, waiting for me to have one good day. But, still I cannot leave my flat. I cannot be a part of the world outside these walls. I am a prisoner because of my illness and my needs that are not met.
I am grateful! I am grateful for food to eat and a roof over my head. For benefits to keep paying my bills. But I feel demoralized and shamed by society because I can't do any of this for myself. I live in a world where people who can't work are looked down upon.
I hear about research, I hear about other medications and combinations of medications that can make it a lot better with a doctor who takes time to work with you. But I have been abandoned and treated as though I don't matter at all. My GP just gives me the repeat prescriptions of the ones I've been on for two years which don't help much. She doesn't even seem to care about how I am. Social Services turned me down for assistance twice, saying that their funds have been cut and they can't take me because my needs are not as severe as some others.
I was strong, healthy, worked hard, drove a car all over, cared for others, gave to others constantly. Now I am forgotten... maybe because I cannot do any of that anymore. Friends have gone. Family don't have time to phone, busy in another place.
Where is the person I was? Am I important to no one now? This is the reality for many of us. I am not alone. I am not too unusual. Where is the funding and the research and the new treatment for my pain, my soul aching, bone tired constant exhaustion, my laundry list of weird and absurd symptoms that nobody with half a brain would make up and pretend to have? Why am I and others like me still being treated like idiots who imagine all this?
I am still here. I am still here. I am still here!
I totally understand that for some it is difficult to get the help you need as some health professionals seem not to listen and I have read on here how often it happens. I am sorry if the post about the better prognosis seemed insensitive in any way. I just thought after such an emotive poem some positives needed to be added to give people hope.
I know everyone is individual and has different levels of severity of symptoms but it might get better. It may be a long road but it can happen, so please try not to give up hope. I was bedbound for 2 years and eventually rehab, neurotransmitter medications and gentle exercise helped me to mobilise more. I still have pain, use my crutches when I can go out and still have flares, but it is better.
I guess I should have said the strength of person at the start of the poem although challenged for a while, may still pull through to be standing tall once again. I am truly sorry you feel so isolated and ignored by the Health Professionals & Social Services. We are always here and the Samaritans are available 24/7 too, if you need them.
Do you have many people to visit ? Or any hobbies you can lose yourself in for a while? I found when bedbound that trying to learn or do something new was very therapeutic. I know how hard it is to look around and think the house is not how you would have it maybe, however I expect many people realise that it is because you are poorly it has an extra pile of magazines or a few dirty dishes or whatever. Try if you can not to worry yourself about this as you and your health are more important.
It sounds like you are doing loads on your slightly better days and then your exhausted and have a flare which lasts for days. Would that be an accurate statement? Sometimes to rehab you need to do less each day to build up to doing more. Again I know how difficult it is and can understand after being laid in bed when you feel better you want to do things for your psychological well being if anything else. You may be without realising doing the push & crash cycle.
I do sincerely hope you find the strength to change GP's and keep fighting Fibro & M.E.
If I can leave you with something, the roots of a tree go down deep into the earth and although the branches may get blown around by the weather, it still stands strong and I believe you can too.
I have not been checking to see who has replied to posts I've written on. I feel bad that I did not see yours and say something about it.
I am happy inside myself, and at peace with myself. I am not an angry or miserable person in general and I have adapted, after a few years of grieving the loss of my whole former life. Now I do find pleasure and joy in many things.
However, this situation for elderly and ill people who have no family or friends continues to be pushed aside. People assume that everyone has someone. This is wishful thinking. And if people who are dealing with problems like this can't speak up and no one speaks up on our behalf long enough and loudly enough, it will go on and on far into the future generations.
I am angry and frustrated that I can't get a reasonable, educated, competent kind of service from medical professionals who are employed and paid quite large salaries to listen and to help--especially when I do not hound them, ask for anything unusual, or visit them often. I have never been rude or overly emotional in the doctors' surgery. I have always been respectful and polite, and yet so many of them and the DWP/ATOS people I have dealt with continue to treat me (and I suppose most others with Fibro and M.E.) as though we are just one big pain in their backsides and should be 'put in our place' for even expecting some kind of adequate assessments, diagnosis, examinations, and attention to our individual needs. Once there is the label of Fibromyalgia, they often will not even listen to new or more serious symptoms that arise.
I often feel I'm being tolerated or treated in a condescending manner. A neurologist who saw me said I should not read things online about my condition. So If I follow his advice, then there is no way for them to help me beyond the drugs I'm taking and I should not even be on this forum reading what others are writing or consulting with the NHS website itself about symptoms and treatment options. Maybe he thought I was a malingerer or had imagined the symptoms for which I was sent to him. He said I did not need any tests or assessments.
Can't intelligent people see that the only people benefiting from lack of care and proper services being provided for us are the drug companies? We are costing the NHS and taxpayers a lot of money because we continue to be ill and to require benefits.
Instead of using the money to provide more information, access to services and such that will help us recover all or part of our health, they mostly just prescribe more drugs or send us to mental health professionals. Yes, it helps to have coping mechanisms, but it is often implied that some kind of reinterpretation of what we feel is going to show us that we are imagining most of our problems. It's like 'Think right, and you will get well." They wouldn't say that to someone with heart disease or kidney failure. This would make anyone furious if they allow themselves to feel the insult of it.
Fibromyalgia and M.E. are common conditions! Why does it continue to be something that the average person has never even heard of? Why do they believe that ME/CFS is imaginary or just laziness, if they have heard of it? We don't get half of what people with other conditions get in terms of attention in the media, funding, and services. We just get prescriptions. This is wrong. I feel our human rights are being violated in many cases because the medical organizations that the NHS is part of have stated clearly that we suffer from real conditions, and have given clear guidelines for minimal care standards.
Their own statements about the illness are clear that it is made worse by stress and by over exertion. Yet, they commonly put us through months and years of stress that even a healthy person would find very painful and destructive to their outlook, if not their health. They counsel us to exercise more and diet to lose weight. This puts further stress on our bodies, and we often have no one to monitor this activity. We are made to feel that we have caused our pain and illness. If we are overweight it is usually mainly due to things beyond our current control such as inability to live an active life, inability to spend time cooking healthy meals or shopping for fresh foods, and medications they prescribe for pain.
It's far more than a few dirty dishes and such. Before I had the DLA money (at the lowest rates after appeal) I often ate only one cold meal a day... a bowl of cereal or a sandwich, and at odd hours whenever my pain and fatigue would permit me to go to the kitchen to get it. Trying to take a bath was usually too much so I sometimes went up to 9 days without bathing. Trying to cook resulted in burns, cuts, leaving the cooker on accidentally. I flooded my downstairs neighbour twice because I turned on the bath and then blanked out and forgot I'd done it.
My home was in very bad condition because I could not even manage to care for myself let alone anything else.
I know that I am not the only one in this position. It has changed now that I got DLA and have spent a few months recovering from the stress and difficulty I had. Also, I have stopped following my doctor's advice to get up and move around every half hour. I was falling, having shaking fits, and blacking out.
I now sensibly stay put if I am in that much pain or feel that shaky and unstable. Sometimes I still find that I put a frozen dinner in the microwave and then can't get back to take it out for over an hour to actually eat it. Sometimes I am in so much pain and so tired from this effort that I can only eat a few bites, rest several minutes, and then a few more bites, etc.
The best thing is my cleaner/helper person. I have a very nice lady who cleans for me 2 hrs a week. I can pay for her with my DLA money. She is cheerful and understands. I appreciate her very much. This makes it possible for me to eat more fresh food as she can prepare a bit ahead for me to have with my frozen dinners. With her to help with cleaning, I have more energy for a few other things I need to do each week and if I can't manage something, I don't push myself.
But it is impossible to socialize or even go outside my flat beyond my own balcony when I've been told I don't qualify for a wheelchair because I am too ill to go out 4x a week.
The other day, I cooked scrambled eggs because I felt pretty well. I heated sausages my cleaner/helper had cooked for me, got instant coffee and juice. Later, I sat for a few minutes on the balcony in my lounger. I put a load of laundry into the washer and hung it up to dry. In the evening, I spent 3 hours sitting up in bed instead of leaning back on cushions, I was talking to online friends. The next day it all came crashing down on me and I was in horrible pain for over 2 days.
I have no visits from friends at all. The one friend I had told me not long ago that she doesn't want to stop in even once every few months to have a chat. She only wanted to talk on the phone. She said that she is overloaded at work and just wants to go straight home after. She has big problems with her abusive ex and can't handle my problems which she finds overwhelming. I listened to hers on the phone every time she called. I care about her, but now she's walked out on me and had no contact for months.
This is something I have read happens with most people who have chronic illness. One by one their friends stop contacting them and leave them on their own.
It is the reason so many people with chronic pain conditions and M.E. and Fibro do suffer devastating depression and some kill themselves. I struggle and I have a lot of online friends. But I have no one to touch me, hold me when I cry. No one to visit me or even help if something worse happens to me. That's all.
I am a very creative person and used to teach classical singing at university. I was extremely active and a workaholic. Now, I can't do any of that. I am too ill and it has been too long.. I'm way outside the stream of any musical life. I don't even want to go back. I only want to go forward and I have discovered that I can make visual art. I am a digital artist and spend a lot of time doing that as well as participating in online artist community activities and forums. I like to laugh and do silly things and make jokes about myself just to cheer myself up. I have a budgie who is lovely and cheerful. Sometimes when I was very depressed I kept from harming myself because I didn't want him to be left without a good home.
I have a lot of online friends. Some visit me in Skype and it's a little bit like seeing them in person. You get the face, the sound of their voice. We can laugh together and care for each other. I meet many, many ill, lonely, needy people online!!! Many are the kindest and most caring people in the world. They have so much to give, and yet no way and no one to give it to!
The world has many sick solitary people and there is so little real help for them. Can someone listen and start to change this? That's all I ask.
beautifully written at what obviously was a low point for the author.... but as only suffering for past year and a half or so I can only scratch the surface of that emotion. Definitely a 'good day/bad day sort of condition for me. I just pray for strength and courage for all of you who can identify with this more than me. thanks for posting
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