New and in desperate need of an understanding ear

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New and in desperate need of an understanding ear

Postby kittyboo12 » Tue Sep 11, 2012 11:41 pm

WARNING: This rant is a bit of a downer, I needed to offload and maybe find somebody who could tell me that things could get better.

Hi all, My name is Katherine, I'm 21 years old and I'm currently studying English Literature from home with the Open University and receiving Employment Support Allowance. I was diagnosed with Fibromyalgia in 2008 but have been suffering with various illnesses since I was about 12. First chronic tonsillitis, then a post-op infection from the tonsillectomy, then a post-viral fatigue disorder called Henoch Schonlein Purpora (excuse my spelling) and then I just didn't get better, which led to being passed from doctor to doctor till I finally met my consultant, who is a Fibromyalgia expert. He's a charming man who has very much looked after me. Although a hospital admin fluff-up meant I couldn't get an appointment for a three year gap!

I've been trying to keep my head up, I had to drop out of college because I couldn't cope but I went back and completed my A levels as a distance learner. Being a perfectionist doesn't help - I wept with disappointment at getting BBC, my mother called me a fool for not appreciating that mine was not a normal or easy situation. Now I'm trying to get a degree, which is daunting but I'm determined to do it, no matter how many obstacles. I'm also inquiring about volunteering one or two days a week, as I'd love to help people and I've never been well enough to get a job.

I guess it's all just getting on top of me. All of my friends are graduating university, they all have new lives and friends and experiences, whilst I never had the chance to leave home. I'm largely housebound. My big brother is living in South Korea too, having a great time, and a few of my friends are also beginning new lives in different countries. I'm incredibly proud of them and pleased, but it sucks to be left behind.

Even though my parents care a great deal and appreciate that I'm unwell, the sympathy is only really there at convenient times, I guess it's because they can't help but get frustrated. My mum asks me to do a lot of cooking and cleaning, and if i don't do it, it isn't illness, it's laziness. These seemingly simple tasks exhaust me and leave me incapable of doing anything else.
My parents are also in quite a mess financially which means that my ESA tends to be borrowed/used for food or general costs (on top of the rent that I pay), so I really don't have much of a life.

My boyfriend can be quite helpful, but when we argue the first words out of his mouth are 'I have to do everything for you. You're so lazy.' and when on holiday with them all recently, I ran myself into the ground trying to keep up with the things they wanted me to do. When I said no to a swim on the third day, having been swimming the day before (which is a sore subject for me - I fiercely miss swimming but the tiny amounts that I try to do are agonising), I got a lecture on being lazy and letting the illness take over.

I'm really lonely. I feel like a failure, and that nobody understands. I feel as though my life has been taken away from me and it will never be given back. I am off anti depressants currently, but have tried them in the past. I gave up as they don't take away the sadness. I have suicidal thoughts quite often, but I definitely do not want to give up.

The medication I'm on is (I think) giving me some problems. I'm taking pregabalin, tramadol and amitriptyline as well as the contraceptive pill (to regulate my cycle as I have polycystic ovaries too - does anybody else have this combination? Does PCOS cause you any problems?). I have recently (since starting the pregabalin) started suffering massive cold sweats, restlessness - I feel almost as though the muscles in my legs are too short for my legs and so they feel very tight and uncomfortable - does this make sense to any body??, as well as nausea and vomiting. I am thinking of stopping the pregabalin as I haven't really seen any improvement. Any opinions about the pregabalin?

Basically, I'm not really a happy Kitty :( and needed to offload. Thank you, (if you managed to bear it!) for listening. Any replies, with your experiences or just to say hi, would be very welcome.

Also, I'm from Southport in Merseyside, are there any groups nearby and do people find the groups helpful? Thanks! xx
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Re: New and in desperate need of an understanding ear

Postby Flash » Wed Sep 12, 2012 12:31 am

Hi Katherine, it's o.k, Iv'e just had a rant in the soundproof booth. Yes, I understand other peoples opinions. They're fast with the advice, I know. It is frustrating for other family members though, no one can really understand F/M unless they have it. We can show them leaflets, even get them to look on this site but nothing can describe the pain we're in let alone the feelings of hopelessness.

I worked in mainly male orientated jobs and was very active generally. Lazy was never a word associated with my life. I brought 2 lads up alone with no support. So now, being accused of lazyness is hard to take.

I suppose F/M kicked in slowly after glandular fever closely followed by a car accident 16 years ago. I also have arthritis.

It's not easy, I know. I too feel depressed and yes, the suicidal thoughts ring bells with me. But, really, you should see your G.P about this as you need to get it taken in hand. Get him/her to review your medication but don't just stop any prescribed drugs without advise.

You will find a lot of support here, and everyone will understand.. Don't appologise for letting off steam. We all need to do that... Read on and see. I hope you find ways of coping. Take care. XX :hugs:
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Re: New and in desperate need of an understanding ear

Postby kittyboo12 » Wed Sep 12, 2012 3:15 pm

Thank you very much for your reply (is there a way to reply to replies directly? I'm still working this out), it helped a lot to hear that someone understands, as I'm sure everybody on here will do.
I felt a lot better after saying it really, I knew that people on this forum will understand and that calmed me down a lot. I just needed to rant I guess. Things are looking a lot brighter today :)

Despite my moaning, I really do understand that my parents get frustrated, I know they care very deeply and love me very much (I know my dad cries in private when I have a particularly bad day, because it hurts him to see me in pain. I wish I could take that away from him, I hate that I make him so sad) but don't know how to help. Sometimes I just get frustrated with them not being able to understand, because I work very hard to keep the house running - buying and cooking the food, cleaning etc - as well as studying, which in turn wears me down so it hurts to be called lazy. As, by the sounds of it, you know very well! I can't imagine somebody thinking you're lazy after you've achieved so much, but as you said, it's very difficult for people to empathise with FM I suppose.

I will definitely talk to my doctor about how I'm feeling at the moment, emotionally and physically. Both my GP and consultant are very thorough and supportive. I have had problems with depression since I was a lot younger, possibly even before I was ill (its hard to remember exactly). I've been medicated, in therapy and on suicide watch at different times in my life - it's just finding the plan that will work at the moment I think. I know the help is there and, as of today, I'm sure I will find it.

Coincidentally I actually found a really inspiring letter online today, from a comedian to a fan who had emailed him asking if he'd ever experienced suicidal thoughts (because his material covered his previous depression) and the response was a long and detailed account of how bad things had been for him, but how they really got better, and how he has love for the whole world now because he knows how bad AND how good it can be. Really reminded me of the good days, because there ARE good days (just not for the past few months) and things can get better, even if the pain wont go away.

Thanks again for listening, it has helped a lot just to be able to say that sometimes things seem impossible, and has made me think that maybe carrying on isn't as impossible as I thought.

You take care too xx
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Re: New and in desperate need of an understanding ear

Postby masonsbarms » Wed Sep 12, 2012 5:14 pm

hi, kittyboo, reading your post made me think that no matter how bad i feel at the moment i at least had a very full life prior to fm,

this has not made me feel down but has made me think how lucky iv been,

i am not surprised you are feeling like you are with evrybodys life moveing on, it is hard,

you know how much your parents love you, my mum dose not understand at all but i know she loves me and for that i have to be satifide.

we all feel bad when we see that our loved ones are upset by our fm but we cant hide things from them we have to be honest because bottling things up isnt good,
you said just getting things of your chest has helped a bit, and you know what you have to do, you need to find the right balance of medication and then you may feel better.

you have done wonders getting your a levels and studying for a degree with all you have gone through you are far from lazy you are amazing ,

ther are people out there that are fit and well that havnt done what you have.

i hope that your gp can sort things out for you and remember the love you share with your family and how much you have achived.

stay strong and take care xx
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Re: New and in desperate need of an understanding ear

Postby kittyboo12 » Thu Sep 13, 2012 1:16 am

Thank you very much masonsbarms for your kind reply, I'm glad that my post reminded you of good times :)

Yes, I know my parents love me very much, and as much as we may frustrate each other, I wont be forgetting that in a hurry!

I think I'm a lot younger than most FM sufferers, which is a bit depressing, but there are always worse things that could happen I guess. I read a very inspiring letter about keeping your chin up through depression today, which helped me very much. I'm still sad and hurting, but I don't want to give in, and I think that's what's important.

Thanks again for your kind reply, I hope you're doing well. All the best xx
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Re: New and in desperate need of an understanding ear

Postby masonsbarms » Thu Sep 13, 2012 6:40 pm

hi, i have read your other post and it is inspireing i hope that you stay strong and you get your degree.

take care xx
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Re: New and in desperate need of an understanding ear

Postby kittyboo12 » Fri Sep 14, 2012 11:59 am

Thank you :) I'm really looking forward to the next modules of my degree (can't wait for them to start, only a few more days!) because last year, doing my first module, I was too scared of going to the tutorials and big seminars (they aren't compulsory for the course) because of the pain of a long journey and, mostly, anxiety. This year though I'm determined to go to them and maybe meet some new people. I think it's time to try and get out of the house and just push through the pain :)

The other post really brightened a bad week for me, it's nice to have things put in perspective I guess, so I hoped it would help some others if I passed it on. I'm really glad you enjoyed it :)

I hope you're well and keeping on top of everything ATM. Take care xx
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Re: New and in desperate need of an understanding ear

Postby denys » Fri Sep 14, 2012 12:59 pm

Hi Katherine and :welcome: to the forum, I was in two minds about moving your post into the private board but as its your first and although you are sad its not too personal so will leave it here :-D :-D :-D :-D :-D I really feel for you as you are so young and are bound to feel that all your friends are moving on. BUT please please be proud of what you have achieved also.

You have a good mind set, pretty positive on the whole, but you have areas which make you sad and would do the same for anyone suffering a chronic condition. I know you stopped the anti D's but ammies are used for depression as well as pain relief, if the pregablin is not helping talk to your GP about stopping them DONT do it alone, it has to be withdrawn gradually.

Have you thought of a talking therapy, they do help as you are talking to someone not connected to you who can be objective and open other doors for different therapies which may help. You are young you may well find things improve and your quality of life can become so much greater :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed:

Support groups can help some members so check them out, also ask your consultant and GP if they know of any groups aimed at younger people which may be more suitable for you.

As for your parents/boyfriend etc. print out 'one for the non-believers' and ask them to read it explaining that this is how you feel on a daily basis it shows that you arent lazy but hurting :( :( :( Can your parents seek help from CAB etc for their debt which may take some of the pressure of you all???????????

Anyway enough for now as this has taken me ages to type we are always here to help and dont ever worry about ranting we all do it from time to time :-D :-D :-D :-D :-D
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: New and in desperate need of an understanding ear

Postby isitme » Sun Sep 16, 2012 11:37 am

hi

its hard being part of a family unit whichever role you play.

your family do love you or they wouldn't care and sometimes you have to just let it fly over your head. i find this hard myself with my kids but the thing that has helped me only recently is i am starting ou studies for first time this year october so i have been spendign my time getting stuff ready and listteniing to lots of podcasts (as cant hold books very well).

i realised this distraction has stopped me thinking all these bad thoughts all the time and has been a great distraction - i would love to hear how you have got on with ou in the past you are very clever to have already got through your first module and looking to stretch yourself abit more.

this is my first attempt at sticking my toe in the water afte rfeel so isolated after getting this 2years ago. so you are so brave.

and there are lots of podcast son itunes and free stuff to look at in advance on openlearn site. enjoy doing something for yourself as well as the household chores and say soemtimes if you cant manage something.

taek care.
:-) :-) :-)
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