Unfair burden?

[CindyThomas]

I've been with my DP for almost 20 years, we have two children, one flown the nest and the other 17.

I became severely disabled six years ago, and since my DP has had to shoulder the burden of everything as I'm bedbound. My DP has a severe health condition of their own from birth. Neither of us are able to work.

I feel like I'm unfairly impinging on DPs life, they have little control of their own lives and our friendship circles are non-existent. It's often said love bridges all gaps but I feel an unfair burden.

I'm giving thought to ending things. We still love each other very much, but I don't want to be responsible for fucking up DPs life.

Thoughts? (Have NCed for this).

[daisychain01]

I think your DP deserves a say in this, don't you? It's a bit harsh splitting up because you don't want to burden him, when what that means in reality is you are taking away some of his choice.

Can't you talk through the situation with your Dap in terms of short term and longer term, in the context of your health concerns and getting a sense of how you can do something with an obviously very challenging set of circumstances. Consider all option, even those you haven't thought of, on your own

[daisychain01]

DP

[ThePinkOcelot]

When you say ending it, do you mean the relationship or your life?

If the situation was reversed and it was your DP bed bound would you want to leave him? Would you like the choice in the matter?

Sorry for all the questions, you don't have to answer them here x

[CindyThomas]

Obviously there's a conversation needing to be had. My thinking has definitely created a mindset where something has to give - whether we break, whether I go back to the doctors and demand support, or simply trying to stick two fingers up at the disability and implement some semblance of normal life. Even popping to a pub for a salad or a pint once a fortnight/month. Could have a varying range of effects on my health.

I'm definitely depressed, but not suicidal. I couldn't do that to DP or the kids.

[CindyThomas]

The situation has been reversed actually. I supported DP in every way, doing pretty much everything they are doing now. Heh.

The impact on our daily lives aside, no social circle is dire. Even when you love someone unequivocally, it's great to have friends. Being ostracised from society is not fun!

[Piemernator]

I do not work due to health reasons. You do not need to write what your actual condition is but have you any kind of care plan? Mine is managed now due to assistance received. It will never go away and its here for life unfortunately but DH and I discuss stuff in depth how it impacts our lives and do so on a regular basis, Have you had any kind of discussion with your partner?

[HeddaGarbled]

Do you have any social services involvement? You may be entitled to some home care. Are there any charities or support organisations for either of your conditions? There may be social groups attached to those. Or social groups for carers. Local churches may be also offer some support. Get on the internet and do some research.

[daisychain01]

You're already thinking along the right lines.

Work with your DP to make positive changes to your life, which will change your outlook, it will give you things to look forward to. I expect you can't be overly spontaneous, planning will be needed, but if you start off with something easy to manage like a local meal, rather than anything too ambitious it will give you a sense of possibilities. So, no hiking up Kilimanjaro to begin with, OK?

If you love each other, build on that, as your foundation.

[daisychain01]

And definitely remove the word "burden" permanently from your thoughts. It's lovely you have each other. Think of the song "he ain't heavy, he's my brother" .....

[MatildaTheCat]

I don't think splitting up would make either your or your partner's lives any better at all. Having identified that you are depressed and isolated is a good starting point for trying to access more support.

Have friends and family drifted away? A general email saying you miss seeing them and would welcome a visit might kickstart some additional people in your daily ( weekly/ monthly) lives. Most definitely have a look at local volunteer centres for possible befriender visits or other help. CAB will help you check if you are receiving all the benefits you are entitled to.

Despite being severely disabled ( I have a disabuwhich stops me working and can be very limiting) can you negotiate with yourself regarding the benefits of getting out? Does a trip to the park or the pub possibly outweigh the payback you might experience? Have you had all the best possible help with managing your condition? Going on a Pain Management course helped me greatly ( though quite slowly) in finding ways to go back to some of the things I previously enjoyed doing in a modified way. Planning and pacing activities has made a lot of difference.

You've made the first step by posting here. Good luck.

[CindyThomas]

Piemernator: I'd rather not disclose the condition, would identify me methinks. In context, all the gp does is throw painkillers at me each month. Not that I'm ungrateful mind, but my condition is complex and multi-faceted. It's a lifelong condition too with no prospect of cure.

So there's no care plan. DP and I want the bathroom converting to a wet room, gp supports it but we can't seem to push it over. Can't even get a fuckin disabled bay painted outside despite wielding higher mobility PIP...

Hedda: I contacted Social Services a few years back when things got really bad, their response was, "What do you want us to do?".

I think you're right daisy, just trying to insert some normality would be superb. (Think "Your Love Is My Drug", you mean, none of this ancient crap ;))

Matilda: My "friends" turned out to be disablist bigots sadly. Better off without them. Your post has inspired me to reach out to a very dear old friend who completely gets me too. We drifted apart over a decade ago, but email sent :)

I think a very viable option is to push against the disability and simply be prepared for negative consequences.

I did attend a Pain Management Clinic, they echoed the GP. My condition is rather poorly understood in certain manifestations.

I have probably identified both the condition and myself actually. Balls.

[Penfold007]

Contact adult social services again and tell them you want a joint assessment under the Care Act They are obliged to come and see you at home and care out an assessment of your needs and your wants. They then have to give you a written care plan and put in place any care package you both agree to.
They are right to ask you what you want, you need to tell them.
Is there a support group for people with your or your DPs diagnosis? They can be really helpful.

[Guiltypleasures001]

Hey Cindy

To be Honest does it really matter if you out your condition lovely or even yourself a little?
You never know someone might think fuck I'll go round say hi, I didn't know she felt like this etc

The other thing is this forum is huge there might be a tip or two to be had on your condition you never know. You sound ground and I don't think anyone would blame you, but maybe it's time to gather your inner bitch and start shouting very loudly.

It always seems to be he who shouts the loudest gets the help now days, I'de be contacting the local news rag doing your best daily fail sad face, pointing at your bathroom
I also,echo others your dh has a say in whether he wants in your relationship or not,

At the moment I have a really bad trapped nerve in my leg I also have rheumatoid arthritis and possibly fibromyalgia which Flairs up now and again.
I stopped my work just before Dec for a serious family Illness they got better thanks god I got worse ffs,
I've been watching the world from my chair looking through my blinds and sinking in to depression, then last week I decided fuck this and started doing little things a bit at a time, these felt like small victories
And started to lift my mood.

Granted I was hobbling around like a an idiot but hey ho no change there then, I hoovered the front room and kitchen yay me, I was in agony afterwards but I'm always in pain so what the hell.
My long winded point being you can choose how you go down, either with a wimper or like a screeching banshee, it may well help your lovely dh to see you fight rather than sink.

Oh and lastly in my experience she who makes herself a nuisance on the phone hourly or daily gets help just to get rid of her.

[CindyThomas]

Penfold: Very useful, will give them another tinkle this week. There are support groups, but as both our conditions are so complex and affect people in varying degrees. Both incurable. I will do another round of Internet searching.

Guilty: I don't mind that much. I dunno, it's just quite nice to have the anonymity.

Your post is great. You're totally right about shouting. I used to be part of a wide group writing music which was unbelievable. Challenging, frustrating yet so rewarding. I so miss it. Illness has trapped me in a fucked body yet I still have all the passion, drive, determination and ambition I had back then.

Anyone wanna make some phat beatz, melodic masterpieces or luscious lyrics?

[Guiltypleasures001]

if I may over share one of my set of tabs has been upped recently so I'm suffering ongoing constipation tmi I know my lower back is going mental and I've been shovelling weetabix
Down me trying to creat a tsunami

[CindyThomas]

Opiate-laced bulletshits are not much fun...

[Guiltypleasures001]

Damn pressed too soon

Annnnyway we've been doing some sorting out in the kitchen and I needed a few new hooks for tea towels

Dh comes in with a spindly looking coat rack type thing with cats and dogs on the top of it and stands in the doorway presenting it to me like a cat with a mouse present.

Me. What's that
Him new tea towel hooks
Me really won't hold shit they'll slide off
Him disappears rummaging from kitchen comes back tea towel on hook
Me won't stay on I don't hang them like that
Him re hangs from different angle
Me not like that
Him does it again another 4 different ways it stays on
Me fuck off
Him walks off giggling
And is now fixing horrible black dog cat hangy thing under surface

This bloke works long hours and has been coming home cooking dinner and putting up with my whinging and shit hole house for a few months, plus hugged me when in tears
I just sit on a kitchen chair and play act berating him and he does theatrical sighing in return

If I ever broach the you didn't sign up for this shit comment, he shuts me down. He's been my rock and he knows how hard it is for me to lean on anyone, yet alone trust.

Yesterday I had a better day, couldn't sleep so up at 6, hobbled around the kitchen did everything looked fab as far as I was concerned, washing in dishwasher on etc all,clean.
Parents come round my Dad straight away there a cobweb on that light etc etc, they left I burst in to tears, all my little victories trashed in one fell swoop I was crushed.

Dh said fuck him you know what he's like he never changes don't let him get to you, and considering what I do professionally I should know better.

Anyway he's making noises from the kitchen so I'm expected to go in and tell him how shit it looks

[MatildaTheCat]

Attending a pain management course is very different to attending the clinic.mmine was run by one psychologist and one physio and was eight morning sessions. Some of it was useful and has stuck, other bits not so much.

I also carried on meeting up with the group (8of us) for a couple of years and still see one lady. And I get to see a psychologist once a month which is truly valuable. It also enabled me to have eight free AlexanderTechnique lessons which were brilliant. So definitely worth investigating what is available.

TBH I found most of the other group members very negative about all the ideas so only do this if you want to make changes in managing your condition, there are no magic wands.

Yes, yes to getting back to some interests and activities. There are hundreds of free online courses on FutureLearn lasting a few hours a week and done from my bed. Get out of the bedroom, get dressed, get outside. I know exactly how hard it is. The drugs sap your energy and enthusiasm without the condition itself ( nope, I haven't guessed) but I'm telling you it's worth it.

Hope you can find something in all these replies that help you get back some quality of life.

[Guiltypleasures001]

Have a look at

The mighty.com
And post secret.com

It kinda
Let's you know know ones alone in their pain

[CindyThomas]

I'm sorry you're suffering too Guilty. Your posts are amazing, you may not realise it but you nailed exactly how I feel. Feeling a burden but you know there's a rock close by. I totally get your parental situation too, mine are exactly the same. Shit hole house, brush your hair, polish your wood. It gets tiresome and hurts. DP deals with them day-in, day-out on the phone like a stormtrooper. Takes no shit, gives zero fucks and tears them down when they say things like "Cindy should get out of bed the lazy bitch, Cindy should do XYZ". DP shields me from so much of it, I get rather emotional at times and DP knows it would send me over the edge, didn't have a happy childhood.

Tell your DH it looks shit and where's your lunch.

Your posts really do resonate, it's nice being able to relate. If you were local I'd give you a bloody unmumsnetty hug.

Hi Matilda: that is very interesting. I certainly wasn't aware of this. May I ask how you got referred?

Chronic conditions are so insidious, especially where pain, or fatigue, are involved. Everyone gets tired or has a bad joint from time-to-time right? Makes it so very difficult for other people to empathise.

I spoke to DP - I've wanted a new piercing for a long time, we are going to attempt it tomorrow. We live rurally, about two hours out all in, and if I manage it there's a reward factor too.

I definitely need to get seriously back into music, baby steps one at a time. Your posts are really wonderful too.

[Guiltypleasures001]

Runs in flashes tits

Had them pierced as a divorce present to myself in about 2001ish fucking loved em, went manky after about 7 years, lady surgeon threatened to in her words slice my nipple sideways to save them

Had to take my bars out to save tits boo, loved the twiddling made me feel like I had a dirty secret
Nothing like a BF giving them a good bruising twist and yank tmi

Anyway I digress as per, so the cat and dog hangy thing from earlier hasn't got dogs on it just all cats honestly I swear it had fuckin puppies on it. And to top it off it looks fab, there was nothing to slag off at all, and believe me I tried real hard.

So I skulked off to the utility room come downstairs toilet, where and you'll love this, I can have a wee empty and reload the washing machine, empty and re load the tumble drier above it. Check the freezer contents, and sort the washing basket all from sitting on the loo. Tad dah planned that myself when we had building work done earlier this year.

I came out too, would you like a cup of mint tea because I've found some mint in the garden I don't remember planting, so I said um OK as long as there's no bugs and shit floating in it or dirt, he's not big on rinsing bless him. Oh and he pulled up the wrong potatoes so as an experiment for lunch I've had King Edwards 3 ways with mayo lol.

And oh yes hugs accepted and reciprocated, and if your in Cambs maybe I can throw stones at your bedroom window.

[CindyThomas]

Blimey!

Whilst we're tmi, a friend had her clit hood pierced. Now that was a dirty secret, she could orgasm just by shuffling a bit in a chair. Super sensitive!

What a great bit of planning for your utility room, very smart!

Heh, said dear friend I posted about earlier is from Cambs..... Spooky! You'll need some muscles to hit my window from there though!

[Guiltypleasures001]

Ooo a Clit piercing, I have pondered it but my piercings go manky or reject themselves, and if I'm honest if I had one my pelvic floor would be tight as a drum with all the wriggling I'de be doing

But then again mine came out the sunroof so it's tight already lol ( feux par lols there on mn)
So what sort of piercing are you thinking of then, and how many do you have now?

[CindyThomas]

If you're considering it, don't get a VCH, get a triangle. You'll be soaking the bed in your sleep!

I have five! I want a vertical labret. I had it done before, but my dentist went ape and claimed it had caused an infection. Utter bollox, and it sealed very quickly. It was sexy and I carried it well too :(

I sent you an ickle PM.

[Guiltypleasures001]

Got the pm

Had to look up a VL how old do I feel, I've never been sure about them, do they get in the way of a good snog at all? I had a lovely dangly jewelled belly button piercing completely rejected itself, and so did the second one sigh.

I have my ears done 3 times but only use the top one, the lobe piercings weren't done straight, so when I wear hoops they stick out sideways, look like a crooked pirate.