I’m feeling really low and useless at the minute… I used to have miles of endless opportunities ahead of me, even if I was in a bad situation (bad relationship, horrible job etc), I could always see a new path for myself. I took one of those paths in 2016 - left my horrible job, moved back in with my parents and went back to studying. I was going to get my degree and become a teacher. I put my furniture into my little brother’s garage and expected to see it again in my own new place within 4 years (max.)
Fast forward 6 years and I’m still at my parents’ place and I know I’ve outstayed my welcome, I can’t work, I’m getting nowhere with my PIP appeal, I had to drop out of my degree course, and my brother needs to clear space in his garage. My Dad says I should just get rid of it all, because who knows if/when I’ll be able get my own place again.
There doesn’t seem to be a way out of this situation. And I’m trying really hard to keep a positive frame of mind, to connect on forums and support my fellow sufferers. But I just feel like I’m lying, because no amount of positive thinking is making me feel better and without that, I have no way out.
I’m just exhausted. But I’m not sleeping because of the pain, or night terrors, or god knows what else… sometimes it’s just too much.
And now I feel guilty for moaning, because so many people have it so very much worse than me and I want to help all of them, but I can’t even help myself!
Sorry for the depressing rant - I’m not a danger to myself - just very low today…
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PenelopeClearwater
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Hi penelope I'm sorry your feeling like this I to am having horrible night terrors sweats fear all at night also in a flare up I was a mental health worker I'm now a mental health sufferer on pip with fibromyalgia I know the grief u feel for the old life ....please don't beat yourself up about work ect u did not ask for this take little steps at a time even if that's baking a cake or cleaning your room set little goals try to enjoy time with your parents how I wish I had parents open up the door for me unfortunately I don't...try to learn how to set little goals don't beat yourself up are you takking any medications??anxiety and depression go hand in hand with fibromyalgiaxx
Yes, I’m taking antidepressants and anxiety meds… I have ptsd as well as depression and anxiety - it feels like the fibro diagnosis is just the cherry on top 😅
It actually really helps to share my problems here - I always recommend doing that when other people are at their lowest and rarely practice what I preach, but I already felt a little lighter when I hit the send button… I’ve always been the one people turn to for all the answers, so I don’t get much slack when I fall apart…
Thank you for replying - it helps so much just to be heard 🥰💙
I know it can feel like the future is dark, but you will find a new way to define a bright future that not just lifts your spirit but also gives you fulfillment in life. Hang in there and feel better.
Hi there, Penelope. I was wondering what degree you were taking. I started an OU degree in Psychology - over30 years ago now. Didn't know I was steadfastly working my way towards Fibromyalgia, but gave the studies up because the 18 hour a week commitment was just too much at that time as was the cost. What you have studied so far though, may have given you skills that you can use part time in some capacity. At the third try, one of my daughter's in law, qualified with degree together with ME, actually found a job that suits her and the people are kind and appreciative of her organisational skills. She mostly works at home now and you seem to be computer savvy too, so don't give up. You have lots of value. - Could even help a child or an adult to read. It just needs to be a largely sitting down job right now perhaps. - As a parent, I would just say that I made a commitment for life to our kids when they came along and your parents will have done so similarly and in their heart of hearts would not want you -to not be there. Our firstborn happens to live at home too after his world fell apart healthwise. He has been with us much the same amount of time as you have with your parents and I am so glad I don't have the extreme anxiety of not knowing how he is from moment to moment when he has migraine that makes him extremely sick. Even when we do fall out and fall in again, he's pretty useful to have around though. Is great company and drives me places because I can't cope with that just now. Occasionally he's taken off to the south Coast to catsit for some friends and it occurred to me that loads of people are now going on holiday and worry about leaving pets. Agencies charge about £60 a day for that, or even more now probably. If this sort of thing appealed to you you could post around your neighbourhood, or further afield with your special lower fibro rate and the promise to sleep with the pet all day and night, and you would be swamped. Especially by the posh! They would be more than happy to know that someone reliable was at their home who would not go swanning off during the day and then only come home late at night, and the pet or pets would smell dog and cat on you and be extremely interested in their carer. - So maybe this is one secure option that might appeal to you for the summer and give you a break too. - Furniture? - Our son moved all his gubbins out of storage and into our loft. Plastic boxes with lids get a lot in. The stuff is ok there despite the rats. Rodents in garages spoil things too. Friends might welcome the loan of an extra chair or two. - So that's my ramble! I ramble rather than rant. This forum depends on people sharing the knowledge. I agree with Lorenza too - it is so helpful emotionally sharing the grief for the old life or what might have been ... and with Lisa who is saying ... Hang in there! ... How we must!
This really is incredibly helpful, thank you. It’s lovely to get a parent’s perspective on these things. The job ideas are brilliant, too - I have done some cat-sitting recently, so I think I’ll look into that, more.
I was studying special educational needs and disability studies - I wanted to be a teacher, but I found that my preferred role is working in a learning support assistant capacity - it’s just so rewarding. My preferred age group is 3-5 year olds, so that requires me to be on my feet. I just worry about getting work at the minute, as my health means I’m unreliable, but you’ve really given me some positives to think on.
And you certainly weren’t rambling - it was all very helpful, thank you so much 💙
So glad it was helpful, P. - My aunt did occupational therapy with psychiatric patients from her wheelchair and with half the use of an arm - though she had the great fortune to have the bladder control of a camel and she didn't have fibro. When you are ready to work again, maybe write your own cv with all your experience, preferences and needs and send it around. Someone might want to jobshare with you too. - Three year olds are mostly able to express themselves well. - They have fresh ideas if they are allowed! You might think about writing for that age while you are still in and out of limbo world. There are set formulas for layout etc. The experience you have had already may prompt some ideas, so get someone to dump you at the local library and browse the book boxes to see if that interests you?
I really understand how difficult life can be especially if you feel like you've over stayed your welcome even at your parent's house.
I can suggest talking to them and telling them exactly how you feel. You didn't decide to have Fibro but they did decide to have you.
Getting on the housing market is tough and with rent/housing prices so extortionately high and wages or UC so painfully low it's no wonder you are stressed. Our generation has it pretty bad.
See if you can get someone to help you with your claim. Keep trying because Fibro is an incurable disease.
Perhaps you could sell some of your unused belongings for a little extra money? If you want to keep them then I'd say go through what you need.
Remember that the state of the world isn't your fault and your family should support you, this doesn't mean never move out- but it means that you should work together to find the best options for you.
I know depression is awful and makes us hide away but don't let it get the better of you. That isn't you. You are so much more than depression.
Accepting our problems is part of the healing process. Think of it like this "Yes, I've got Fibro and a few other issues, yes I can be depressed about it but I can also recognise this and change it a little at a time"
What works for me to get out of depression is I actually allow myself time to be a bit miserable, this could be just an hour or could be a few days/weeks. Then set an alarm (don't laugh... heheh) for me to get back on track. I start small by just writing down how I feel or calling a friend. I make sure I drink water and eat some thing and shower.
When you're ready, be proactive about being depressed. Look for some therapy, have that chat with your parents, make a list of what you do and don't like, try some mindfulness and self care and don't feel guilty about it.
I really hope you can get through this patch and get to where you want to be!
Thank you - this is really great advice. I know depression tells me I’m very alone in everything and that I should tackle everything at once, but you’re right, I need to give myself a chance.
I really appreciate the advice - can’t thank you all enough, really 🥰💙
Hello, sorry to hear you're having a tough time atm but it will pass,even if it's just the night terrors loosening off or the pain abating slightly. We all have our ups and downs with this horrible condition, the only thing that you can do is accept that life is still very precious even if it's feeling overwhelming and beyond your control for the meantime. I think the idea of house/cat sitting is a brilliant one and I think it's perhaps a bit more doable than trying to get back to an old career or job choice? Also the one thing that I swear keeps me going is hobbies. Reading, knitting, needlepoint etc. Nothing too taxing or heavy but something that passes time and gives me pleasure and a sense of achievement 😀 hope that you feel brighter soon xx
Thank you - that is great advice and I definitely want to get back into my hobbies again. I’m feeling more positive today, even though I’m utterly exhausted!
Hi Penelope,It can be so tough on your mental state when you see no future or relief from the pain , especially when you are also so young.
I have kids your age I can’t imagine how they would survive not being in a ‘normal’ life .
Do not give up on your benefits claim as at least that gives you some kind of financial stability.
Have you thought of applying for social/council housing?
I know it isn’t the same as owning your own home but it would also give you some degree of independence.
I read in your comments that someone has suggested an open university course! Hopefully you can finish what you have started and may one day still have a career in teaching.
Being on the forums doesn’t cure you but at least you can talk to people who are suffering the same so we understand what you are going through and also can give first hand advice on any issues or advise.
Good luck with your future as there will be a light at the end of this dark tunnel your in now. Xx
Thank you 💙 the support I get from this forum is just wonderful - I really depend on it sometimes!
I haven’t looked into housing yet, but I’m getting to that point. I moved out when I was 17 - travelled the world, lived with people and alone… and then this has struck me down and it’s like that old me is being held captive in a broken body! 😅
I’m feeling much more positive today, though. My boyfriend, brother, and parents have been really supportive and encouraging, not to mention the wonderful people in this group. Plus the sunshine is always such a good medicine! 💙
Have you read the Cambridge university research into Long Covid. I put a post on here yesterday as I am taking the supplements they recommend. I don't have long Covid, I have ME and Fibro but it's made a world of difference to my pain and fatigue. 😊
I'm so sorry that you're going through this really bad time. It can be so soul destroying when there seems to be no way forward. Don't worry about moaning, we all feel the same and need to get things of our chests at times, that's why we're here.
Have you tried talking to your doctor recently? Or getting in touch with mental health services? You may benefit from some cbt or counselling, it has helped me in the past. I have anxiety, depression, borderline personality disorder as well as fibro and arthritis so I do appreciate how you must be feeling.
Sorry I can't help more than this but you are not alone and I care about your situation as many others will.
Honestly, just having you respond to my rant is a help - it can be such an isolating condition.
I saw my GP on Wednesday and he’s referred me to their in-house mental health person. I had cbt therapy last year and it did help, so I just need to be patient.
You're very welcome. I hope you get on ok. Sometimes things just feel so bleak and it drags you down. You will feel happy again, just try to be positive and patient. Take care of yourself. Xx
Glad you got some of the moaning, complaining, ranting out of your system. I think it's needed to prevent slipping further into depression and hope you feel less isolated.
I'm burnt out so cannot think of what more to say: not a reflection on your post.
Thank you for reading and replying - I did feel lighter just for having shared, then I went to sleep! And it’s just lovely to have these replies and feel heard and understood - to be taken seriously is a big thing with this condition, isn’t it!
I hope you are feeling ok - be gentle with yourself 💙
Sorry you are feeling so low at the moment. I can understand your frustration. I woke up and felt my pain again and thought *** it, I'm fed up with this! But at least I slept! There is so much I WANT TO DO IN LIFE! But my body just says 'nope'!
I think PIP seem to deny people on principle. Have you got a local disability charity or citizens advice bureau to help you with them? There's a Fibromyalgia warrior benefits group on Facebook, as well.
People don't understand unless they have health problems that limit their lives. Unfortunately including those closest to us. If only we could get them to go through even one day as us. There was a TV programme that put people in padded bodysuits which also restricted their movements, to make young people understand what being old was like, so they would understand and be more sympathetic. There's a few people I'd like to have those bodysuits! Plus something to simulate the pain ( we makes me feel bad, wishing pain on them).
It's so hard watching other people getting on with their lives.
Now days I get so frustrated and angry, although I know that makes things worse. I think people put us in a box marked 'disabled' and forget we are people with dreams, who want to live adult, independent lives.
I completely agree - I’ve always thought people should be given an insight into the trials of others, so I don’t see your thoughts as wishing pain in other people, just wishing to open their minds to the suffering of other people! ☺️
I have some support for the PIP appeal, it’s just such a drawn out process. It’s like a full time job in itself to get benefits, so no wonder those of us who need it end up without whole so many fraudsters manage to get it - they can think clearly enough! 😅 I also feel very let down by the fact that the aim is always to get people into work, so as you say, if you’re disabled and not able to work, you don’t really matter… it’s better than it used to be, but still such a long way to go.
Thank you for your reply - as I keep saying, it helps to just know people do understand what I’m going on about!💙
Can I just say that our own problems are enough. We all compare our 'lot' to those of others and feel guilty for moaning about it,but we shouldn't. I don't know if you're aware but you are a very strong part of this support group. You support and advise and give comfort to those who need it, myself included. So though you feel you are doing nothing to contribute to the world think again, we need you, right here with us.
I'm so sorry to hear you are having such a rough time. I was similar to you before I failed to know my limits and my body just flawed me for over 6 months in December 2019. I'm still working on recovering, but. like you, I can only do a fraction of what I could before. I came onto the site today to post about a book that I've just read that might help others, and but when I saw your post, I wanted to reach out to you. The author is a chronic illness sufferer, and has a professional background in psychology, which is why I found it insightful and helpful. As I said in my review on Amazon, there is also a chapter for family/friends/carers to read to help them understand the illness, and what to say/do and what to not say/do etc. It might help your family to understand what it's like for you, and how they can help. (Just to reassure you, I don't personally know this author, or profit in any way from sales of his book/s).
I hope your life takes a brighter turn very, very soon. Until then, lean on this wonderfully caring community, and let us share the weight of your loss. x
You are doing the right thing Penelope. - reaching out in times of a crisis for me is number 1🙂
It is great you are able to share your feelings, truly.
Not sure if you have reached out for professional support from a local organisation like MIND.
I can here your feelings, reach out for some local support they are extremely helpful to help you to get back on track, - these people can help you to narrow down your personal needs, and to work out what you need and how they can support you with local recourses. They want to help you.
Hi Penelope, you are not alone oh I know the feeling all too well. Been having fibromyalgia for 30yrs and as you know fibro likes to invite it’s friends to join in the party in our body. I fully understand how you are feeling. Been there been suicidal but could not carry it out because of my belief that if I commit suicide I would go to hell but I do not hold this belief on anyone who does because it is between them and God. God knows what they have gone through. When I was diagnosed with fibromyalgia part of me grieving the loss of my health I did a lot of Reseach on near death experiences. From people telling about their experiences to doctors reporting about their patients experiences. Both heaven and hell. This just increased my faith and gave me hope. Oops 🙊 I just remembered can’t talk about that on here. I felt comfort and will leave it at that. Anyway I have been through good relationships turned bad. My world turned upside down with bad things happening loosing my family as I knew it. It wasn’t until 10yrs later I learned the love of my was diagnosed with narcissistic personality disorder when he turned on his second wife like he did with me. My second marriage he hid things from me about his past and presented himself to be someone he wasn’t. But I didn’t believe in divorce so we were married for almost 18yrs. They both had diabetes along with other health problems that they both died at an early age of 53. My husband went into the hospital for another health problem but caught COVID and ended up going on a ventilator which he never recovered. So the decision was made to take him off the ventilator and passed away almost 19hrs later. Sorry for getting side tracked from my main point I understand the feeling you are having. Just not good at expressing my thoughts. I’m sorry you have gone through all of this. 🙏🏼💕💜
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