should i stay or should i go?

spora

Hi guys,

Just looking for some advice. Bit of background info first:

Im 22 and have been with my boyfriend for just over four years. In June 2008 i we both finished uni and shortly after i was diagnosed with a medical condition that leaves me absolutly knackered after doing the smallest things. My neurologist advised me not to work until i got my medication sorted out. Alomst a year and a half on i have had no luck with any of the medications. I wasnt happy with my neurologist as he didnt seem to know much about my condition as its quite rare. I was referred to someone else and he said it would help me to get a part time morning job, so i have a bit of structure to my day. So im currently doing some voluntry work 12 hours a week. I dont really feel i can do much more than that at the moment.

Heres the problem: im finding that over the past couple of months me and my boyfriend have been arguing quite a lot and have almost broke up a few times. I cause most of the arguments because im always so tired so im in a bad mood and im just so fed up with not working and being on benefits. I dont know whether i will ever be able to work more than 12 hours a week as ive tried almost all the meds and they just dont work. Even if i can work i dont know if i will be able to do what i want (counselling) as mental stuff makes me more tired than physical stuff- so its likely that i will just end up working in a supermarket or something- waste of a degree, eh? Ive also got worries about things futher along the line such as can i have kids? because one of us will need to work to support our family but i wont be able to look after a young child all day.

My bf works full time and goes out once a week with his friends from work. I dont go because im too tired. If i did go i would have to come back within the hour and they normally go out in London as most of them live there (we live in Berkshire). The rest of the time he is at home with me. I dont really have a lot to talk to him about as i rarely do anything worth talking about. So not only are we around eachother a lot, but we dont even have much to talk about.

Neither of us know anyone around where we live. Nearly everyone he works with lives in London and i just dont know anyone because its hard to meet people when you rarely go out. The people i work with are much older than me (50+).

My bf keeps suggesting i join a club but i dont have any money to spare and even if i did im far too tired to go out anyway.

So you can see how me always being tired and fed up with my condition + being around each other a lot of the time= arguments.

The question is what shall i do? Theres going to be no change in the near future with regards to my medical condition so i cant see how things are going to change with our relationship. I have recently been thinking about moving. I think this could help as we wont be around each other so much. The problem is as i dont know anyone around here if i dont live with my bf then i would want to move away from the area otherwise i will be on my own nearly all the time. He cant really move because of his job.

We both love each other very much and i feel like hes "the one". He is very very understanding of my medical condition, but its not fair on him that i keep causing arguments.

If i move and stay there until things have improved with me i feel like it could save our relationship- the thing is is dont know if things will improve. If i was to move i would probably move to Birmingham (so 80 odd miles away) as i have friends up there, but i would hardly ever see him.

If i do move i dont know whether it would be best to carry on being in a relationship or break up and once/if im sorted try again (assuming either of us hasn't found anyone else).

Oh and if i do move that means he will be stuck with paying my half of the rent until he can find somewhere else. We have to give 3 months notice here to move so he would be stuck for at least 3 months.

Sorry about the long post, i have probably added loads of unnessary info in, i just wanted you to get the full picture. Well done for reading all of this!

moneysavermum_2

you sound to me like you need breathing space...being locked in conflict wont help. Try to read instead of argueing..read anything just to take your mind off the problem ...listen to music just dont row. Yes this is not an ideal situation for you but try and be positive and it will work in the end and be kind to your boyfirend.

dogcat_2

Hi, you don't say what your medical condition is.... maybe if you did someone might be able to help a little more....

skintbint_2

why not cut back on your voluntary work and try a leisure class at college, if you're on benefits you may not have to pay, do something relaxing - flower arranging, cake decorating, animal grooming? and then who knows you may be able to turn it into a wee business a couple of hours a week further down the road -it gives you a break from the house, an interest outwith the house and something to chat about and look forward to while mixing with other people in the community around you.

ema_o

It sounds like you are having a nightmare with your condition and that obviously takes a toll on both of you, it does sound as if some time apart would be good for you both. However could you go stay with friends for a week or two rather than worrying about moving away and all the consequences? I would say all your questions about moving / should you stay together etc should come after you decide that moving that far away is really the best option.
My OH and I lived 80 miles apart for the first 3 years of our relationship, but we took it in turns to visit each other every weekend, plus spent holidays together and it worked for us even though it was hard work so it could work for you too if you do decide that is the right thing.

I am always reading stuff in Zest about people with illnesses sounding like yours getting better and improving their conditions through gradually building up exercise. Don't mean to sound patronising or anything, just hoping you can find something that will help you.

spora

nje24 wrote: »

you sound to me like you need breathing space...being locked in conflict wont help. Try to read instead of argueing..read anything just to take your mind off the problem ...listen to music just dont row. Yes this is not an ideal situation for you but try and be positive and it will work in the end and be kind to your boyfirend.

Thanks for this. I went to the library the other day and got a couple of books out, so will give this a go. If im too tired to read i shall pop on some music. I do try and be kind to my boyfriend, when we argue we dont scream and shout at eachother and call each other names, but i still feel guilty because he does so much for me.

dogcat wrote: »

Hi, you don't say what your medical condition is.... maybe if you did someone might be able to help a little more....

I purposely didnt mention the name of my condition because it does not affect me the way it seems to affect most people (so much so before i had the sleep studies done my sleep specialist said theres no way i have it). The condition i have is narcolepsy. Like most people i orginally thought this is where you randomly fall asleep no matter what you are doing- and it is, but i dont have this (although i could develop it at anytime). But my sleep study showed that i go in to the same sleep cycle as narcoleptic people do which means i do have it, just an uncommon form of it. Basically my brain has a weird sleep cycle so i am never properly rested and im lacking some chemicals in my brain which enable my brian to recognise it has been asleep.

skintbint wrote: »

why not cut back on your voluntary work and try a leisure class at college, if you're on benefits you may not have to pay, do something relaxing - flower arranging, cake decorating, animal grooming? and then who knows you may be able to turn it into a wee business a couple of hours a week further down the road -it gives you a break from the house, an interest outwith the house and something to chat about and look forward to while mixing with other people in the community around you.

I am not on any means tested benefits, just incapacity, but i will still have a look around see what i can find. My boyfriend wont mind paying for me to go to a class or something, although i will feel bad because he already pays my half of the bills as my benefit is only enough to cover my half of the rent. But if it makes things better between us then he will be happy to pay for it.

spora

ema_o wrote: »

It sounds like you are having a nightmare with your condition and that obviously takes a toll on both of you, it does sound as if some time apart would be good for you both. However could you go stay with friends for a week or two rather than worrying about moving away and all the consequences? I would say all your questions about moving / should you stay together etc should come after you decide that moving that far away is really the best option.
My OH and I lived 80 miles apart for the first 3 years of our relationship, but we took it in turns to visit each other every weekend, plus spent holidays together and it worked for us even though it was hard work so it could work for you too if you do decide that is the right thing.

I am always reading stuff in Zest about people with illnesses sounding like yours getting better and improving their conditions through gradually building up exercise. Don't mean to sound patronising or anything, just hoping you can find something that will help you.

Yes thats a good idea, i will have a little phone around, see if anyone has room for me.

If i did move far away then he would have to come see me every weekend. I wouldnt be able to drive that far (i only allow myself to drive short distances) and i prob wouldnt be able to afford train ticktes. Plus travelling makes me really tired too, sometimes stuff like travelling can mean im too tired to do anything for a couple of days.

I was very niaeve when i was diagnosed because i thought i would have to take a couple of pills a day and i would be fine. I am currently on my 4th medication now (its a long process trying each medication out, i have to see my neurologist first and then stay on them for a good few months). The one im on now is the only one to show any signs of improving my condition. So im hoping if i get my dose adjusted i will be ok. I was trying to do some exercise everyday, but i have stopped this since doing my voluntry work (working in a shop) maybe i should try and do some more exercise on the days im not working.

Thanks for all the replies guys, i really appreciate it

lynzpower

Has your boyfreind been assessed as your carer? As someone with this condition have you had your needs assessed by social workers? I say this as I know I use dot work woth a lady who had a similar condition, and was permanently exhausted. We managed to get some funding for her to have some help around the home ( doing heavy work, eg laundry,. hoovering) as she just wasnt able to manage. PLus a bit of respite for your carer ( OH) whos needs are to be assessed.

I have been wher eyou are, being poorly, having notihng to say and taking it out on OH. I was too ill to work and wasnt allowed to do vol work in case I got sacekd ( long story but I was off sick for almost 12ms). This is about our own confidence- nothing else.

If you can manage 12 hours volunteering aweek, could you manage some paid work instead? It might be wortha try? I dont think working in a supermakret is a waste of a degree, although i totally get where you are coming from as Ive been there too. At the end of the day your health will restrict what you can manage, but havnig an income will help you live, albeit if it is a small amount of money you can do a course, go places etc.

At the least do a little bit of excercise on the days you are not working. Could you manage some dog walking for someone? I would love to have someone pop in for an hour to spend with pooch if Im working a full day and OH is out.

spora

lynzpower wrote: »

Has your boyfreind been assessed as your carer? As someone with this condition have you had your needs assessed by social workers? I say this as I know I use dot work woth a lady who had a similar condition, and was permanently exhausted. We managed to get some funding for her to have some help around the home ( doing heavy work, eg laundry,. hoovering) as she just wasnt able to manage. PLus a bit of respite for your carer ( OH) whos needs are to be assessed.

I have been wher eyou are, being poorly, having notihng to say and taking it out on OH. I was too ill to work and wasnt allowed to do vol work in case I got sacekd ( long story but I was off sick for almost 12ms). This is about our own confidence- nothing else.

If you can manage 12 hours volunteering aweek, could you manage some paid work instead? It might be wortha try? I dont think working in a supermakret is a waste of a degree, although i totally get where you are coming from as Ive been there too. At the end of the day your health will restrict what you can manage, but havnig an income will help you live, albeit if it is a small amount of money you can do a course, go places etc.

At the least do a little bit of excercise on the days you are not working. Could you manage some dog walking for someone? I would love to have someone pop in for an hour to spend with pooch if Im working a full day and OH is out.

I dont think my condition is severe enough to need a carer. I can manage to do things on my own, i just have to spread it out over the week, e.g. i will do the hoovering on a day i have nothing else on.

I am looking for paid work at the mo, but there doesnt seem to be many jobs around and im restricted on times and hours i can work. Also at the moment i think i can only manage to work every other day (so i have a day off to recover). So i havent had much luck finding anything.

Thats not a bad idea about the dog thing. I love dogs (have grown up with 4 dogs in the house!). I did try and do some voluntary work for a local kennels but that made me really tired. I think i could manage a bit of dog sitting or walking just one dog for a bit.

From what you wrote i take it your work involves helping people with medical conditions. I dont suppose you know anything about condition management do you? I found the NHS have a programme which helps you come to terms with your condition and think about it positively. I think i need that- i am just as devestated/upset today as i was when i first diganosed.

Errata

The NHS Expert Patient Programme might be useful and enable you to manage your health problem http://www.patient.co.uk/doctor/Expert-Patients.htm

spora

Errata wrote: »

The NHS Expert Patient Programme might be useful and enable you to manage your health problem http://www.patient.co.uk/doctor/Expert-Patients.htm

Wow thanks, that looks really good, just the kind of thing i need. Definatly going to find out more about it