Im housebound most of the time, i live alone. My illness incurable, the only treatments available doesnt help . Infact one of the medications gave me sensory nerve damage which i cant get a diagnosis for made me housebound/bedbound. No one wanted to answer for that as usual..
Im feeling very hopeless even more so the conservatives were voted back in...I have a PIP tribunal in 3 days. The stress of this alone is making me want to end it all... i truly am sick to death of having to explain my illness too family, friends and so called medical professionals. I am sick of being stereo typed as some loser with no aspirations. And to listen to ''the workers'' complain about there taxes being wasted on benefits and could be spent on something better.... I am one of those people!! guess my life doesnt have much value. But i guess its my fault i have an incurable illness, i guess its my fault i see this world for what it is and i just cant mentally cope with that to the point i am UP and DOWN every other day, maybe every hour..its a struggle.
Im struggling to relate to others, well i can relate i understand completely what there saying but i have no interest, and most of the times there problems are very petty. They have the flu, i have a life long incurable illness every day is pain... yet they look at me like im lazy but they cant cope with the flu.... give me strength.
Im crazy because i have emotions, im crazy because this messed up world makes me sad, im crazy because i see the lies in the papers, im crazy because im not a sheep... but they all seem crazy to me? i am crazy now because this world made me crazy! but they want me on medication, to make me into a zombie and stop thinking..
I feel so alone... they cant even understand why i want to be dead...even if i killed myself id still be wrong.
I havent self harmed in a long time, but i really am fighting the urge to beat the absolute crap out of myself. On top of this ive just come out of a verbally/physically & sexually abusive relationship... im struggling to cope with the repetitive thoughts i keep having, this is making me want to self harm more.
If you understand where im coming from, can relate or have any advice...id appreciate hearing it....
ive had ME in the past and im aware of how debilitating it can be. i had support from only a few family members. No meds helped me either, so i decided to try natural remedies. i went off all gluten and dairy products, got myself tested for visual stress and was prescribed colorimeter lenses by an optometrist. i now take various supplements as well, magnesium, omega 3s, b50s, vitamin C.
hope you find some releif from the pain soon.
Welcome to this site
Basically I can relate to you and the way you feel I suffer PSA with chronic pain and have been this way now for over thirty years. My condition makes me suffer from Reactive depression caused by the damage to my body and the chronic pain associated with bone and tendon pains.
Like you possibly I need to take strong medications that also affect my mood and I also feel that there is no-one that would give me support other than my Wife and Dog.
Over that thirty years my past life was destroyed by an uncaring Government quango who destroyed our quality of life and forced us to sell our family home of eighty years. the only benefit now is I have upgraded a cottage and have upgraded it to make life easy for me. I even lost my job that I had trained for, for twenty six years
I watch my wife the carer who has to do most of the housework and the DIY and that really makes me feel like i am a useless peace of meat and most of Society cannot get it through their heads that in a matter of seconds they could end up in a situation where they would feel the same way. Sometimes in my opinion those who are disabled can feel the same way, to their Peers, and that can, in many cases can be self destructive as it makes people withdraw into a hardened shell of self loathing. and understandable severe sadness
All I can suggest is that you find ways out of this situation by giving those who are seen as worse than yourself as almost certainly, you will find many in that situation. There are always ways that we can help these disabled people and that can assist in giving you meaning to your life and disability.
One problem I have like you is medication. My problem is that the drugs they fork out are cancer medications, as my condition is a overactive immune system. So they suppress your immune system to reduce damage to your joints. The contraindications are severe and that is all they have to offer.
Personally I feel so sorry regards your condition and the only ways you can get support is from Pain Clinic, a CPN and an OCT. who will try and make your home more practical
There are people here who may be able to give support, and show a caring nature
Remember Please do not feel that all your life is a failure, your condition is your fault
Not forgetting the old chestnut of being so very lazy
All lives are important including those who feel their life is useless and not worth living.
Your life general is more important and many able bodied need to understand how quick their lives can change when disability raises its head
Society now since last week will look upon those with chronic conditions as, the new term," useless eaters", comes to mind. This is wrong and society needs to understand many disabled cannot be chastised and a fair society would try and understand those who suffer their chronic illnesses, in many cases with a zipped lip.
We should be all valued and if this is not the case Society will be the looser for it
Hi sorry for your illness and other problems you have, I do understand as I to have serious incurable disease, that I have to struggle with daily, nearly losing my life in 2013 so yes I know the hopelessness you can feel, with depression thrown in as well, but we are alive and we can strive to cope with whatever brings us down, you haven't self harmed in a long time you say, that's strengh, don't give into it now, unfortunately there will always be lies from people, newspapers whatever I hope things go better for you, don't give up !!
I have problems absorbing B12 which were undiagnosed for decades with the result that I suffered years of depression and eventually I was losing my balance, my strength, had huge problems with anxiety, depression and was even starting to develop psychosis ... and a lot of that was after I'd been told and my GP had been told that I had a B12 deficiency. Like ME it is a condition that isn't well understood - in fact there are many overlapping symptoms and one common misdiagnosis is ME.
In many respects I was lucky in that the deficiency was identified by a blood test when I was hospitalised with a broken ankle and I had the resources to investigate it and work out what it meant. There is a very effective treatment but there is so much misunderstanding (the NICE guidelines on the condition are pretty naff to say the least) that many continue to suffer for years after. I'm also luck in that the one thing I need - B12 is something that you can't overdose on and it isn't expensive so treating myself was and is a real possibility, otherwise I think I would have succumb to the dark thoughts because all I could see was things getting worse and worse. Now though the depression and a lot of other things are gone for me but, I can still relate to the isolation you are felling and remember the constant battle against the negative thoughts.
One thing that really helped me with the negative thoughts was a sort of mindfulness meditation that helped me change my response to them so it wasn't one of getting more and more anxious (which just makes them worse).
The bit of your brain that deals with fear and anxiety is very primitive and it tends to work by sending you pictures of the danger and consequences of that danger so you will run away - a strategy that might work when there is a bear at the back of the cave but is pretty useless when what you are dealing with is stress etc because all that happens is you get more stressed, get more thoughts of death, self harm or whatever and so on in a viscious circle.
The process of breaking the circle started with realising that the thoughts were like unwelcome visitors knocking at the door eg trying to sell their religion and what I was doing was actually cowering behind the sofa hoping that they wouldn't notice me and would go away when really what I should have been doing was opening the door and politely telling them that I wasn't interested, so they would go away. So, the changing the reaction was to stop battening down the hatches and hoping they would go away and to start acknowledging the thoughts but to acknowledge them as what they were - warnings that I was stressed and needed to chill. I started thanking my brain for warning me and then going and doing something else rather than getting caught up in the spiral. I thought it would take months to change the pattern but for me it was a couple of weeks.
These days I have a thought and realise that my body needs some B12 so reach for my nasal spray, now that I know it was the B12 that was causing my brain to short circuit as it was.
Are you a member of the phoenix rising forums? - came across them a few days ago on the PAS forum here - they aren't part of health unlocked - but there has been quite a bit of discussion on the PAS forum recently on a thing called 'functional B12 deficiency' - its an autoimmune problem which tries to switch off the transportation mechanism for B12 when the levels of B12 in your blood start to rise so your blood tests will say that your B12 is okay but your cells just aren't getting the B12 that you need. From the little I read it looks like one possible cause of ME is a genetic fault MTHFR - which switches off the bodies ability to process some vitamins properly - folate being one - this in turn can result in high levels of B12 in the blood and hence cause the auto-immune response I mentioned.
There isn't much information on how to treat functional deficiency though the studies I have been able to find suggest that they only really way to treat it may be to flood the system with B12 to the point where there's more in transit than the body can produce anti-bodies to destroy.
Some ME people respond well to B12 treatments - generally methyl form.
Hi. I know that may sound strange, but I am so thankfully to u for voicing Ur thoughts. This is exactly how I feel. Apart from I have severe fibromyalgia. And asthma, etc etc... I collect a new disease every 2years. At 44 I watch the elderly on 2! 2! Stick pass me by. And this when I can actually walk at all. I was once a professional. I lost my job, my house, my frfriends. I have 3 friends left. No family. I resisted mens for a long time as well. Do u know that u can be referred by Ur gp to the London Homeopathic Hospital in Great Ormomnd St. I recommend Dr Bercovizt. U can have high strength herbal capsule that helps control Ur mood. I took them for years. psychiatry has changed in leaps and bounds in the past 15 yes. U have to fight for mens now. It's only some gp who are tablet trigger happy. U can be assessed to see what best therapy can help you. The therapies are amazing! Not like the rubbish 6 weeks counselling u get after looking someone for instance. U need to take Ur own advise really. Majority of people are ignorant about most things! Let alone the obscure taboo subject of depression! U wouldn't listened to an idiot telling u to vote conservative or change from vegan to meat eating or vise versa, so why pay any heed to them about this. I found Dialectic Behavioural Therapy helped me with my self harm, and manage my depression, at least better. I persuaded myself that I am untitled to my benefits. I worked for them for 20 years. Gave charity ect. My mental disability is no different to someone who lost their legs and sight due to diabetes. U r entitled to transport to get u about. U can join MIND groups or any other for instance. As well as one for ME if u can find a local one. U will make friends there. Some that can understand and support you and that you can relate to. U can also look into volunteers that do home visits. It takes a number of little things to make a bigger something that makes a difference. A bit at least. I'll never get better. U r a passionate, intelligent person. It's clear by Ur message. That alone makes Ur life valuable. U can always volunteer for some charity helpline and get the calls diverted to Ur home. For a few hours. U have much to give as well as receive. What would u say to Ur best friend in Ur pposition? Tell it to yourself. Take great care of you. Blessings.
I used to feel exactly the same. I have been ill all my life and for most of it know one believed I was sick. I dropped out of society and the country as I felt so de valued and rejected. I managed to find help through alternative therapy and can say I have lived to tell the tale.
I have gone from Being homeless and hope less to having a productive life in just over 12 years. If I can do it anyone can.
All I can say is don't give up. We have a wealth of information at our fingertips called the Internet and if you are determined enough to get well then you will find a way. You say you are not a sheep the take your head out of the box and do some research on alternative treatments. Get your PIP money and spend it on positive treatments. Find a support group in your area so you can talk to people in the same situation.
Be an inspiration to others and use this opportunity to heal yourself, the universe is sending you a message right now.
It is a great shame that an officially recognised, well documented illness like M.E. is still so often viewed with suspicion/misunderstood by medical professionals and others. I am sure the sceptics would soon change their minds about how 'real' and debilitating it is if they had to live with it !
I am assuming that your symptoms fluctuate ? What is a 'good' day like,are you able to do a little of what you need/want to ?
Sometimes we can feel so trapped and exhausted in an ailing body that we simply do not have the energy to respond with empathy to others.We just feel engulfed.
Regarding PIP, I have not been through the process myself but know of others who say it can be hard work !Best of luck with this and remember to stress how your symptoms affect you on your worst days.
Never think that you have no value-you have an illness,through no fault of your own that limits your capabilities.I, myself have neuro problems.This does not make us 'useless'.In fact,in some ways it makes us stronger-we are dealing with additional physical/cognitive problems and have to work with our illnesses,learn what works best for us and adapt our life.It takes acceptance, patience and a lot of creative thinking ! We can, if we choose to , also draw on our experiences to help others : )
I do not know what meds you have tried for the depression-perhaps there is an alternative type you would consider ? Have you been offered any Cognitive Behavioural Therapy or other Psychological help ? These could also help you to manage your M.E. better.
The relationship you have recently come out of sounded far from ideal.You don't have to settle for this kind of behaviour- believe me you are worth so much more than that.
Finally,I hope that you are eating well and taking a vit/mineral supplement to give your brain and body what it needs.It all helps.
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**Trigger Warning** Feeling suicidal 
Suicide reasoning to my disabilities
**Trigger Warning**: Suicide
Plans for suicide but no further
(Lack of) support at work
