On Being a Burden

I guess this is a post ive been avoiding really as it’s a subject I try to avoid thinking about at all costs.

When I first became ill I was at the end of my first year of a degree in Studio Ceramics I had my future planed out.  I would make wonderful ceramics by day that would sell for lots of money and I would sing by night in the band I was in that was becoming quite well-known locally… life would be perfect…
But as often happens none of these things happened well not the way I imagined they would…

I did complete my degree through sheer bloody mindedness and with a lot of help from my partner J who had stuck with me despite my diagnosis coming only a few weeks in to our relationship…

But the price had been… becoming rapidly sicker, becoming a wheelchair user and having to give up my singing which was like a dagger to my heart a wound that has never healed… I miss it like you would breathing…

My partner J became my non medical helper at college doing all the things I couldn’t… for example he would take me to college, wedge my clay, prepair my tools, sort out library books take me down the hill to the canteen and back… you get the picture… and because I was so tired when I got home he would clean the house, cook our food, bathe me and all the usual stuff people need help with when they are so fatigued they can hardly move. Learning to cope with someone else doing almost everything for you is soul-destroying, its frustrating, lonely, and heart breaking to see someone you love give up so much of themselves and their lives knowing you can do little or nothing about it..
When you literally can not survive without the sacrifice of another’s freedoms it’s a pill that is really hard to swallow.

When I finished my degree I was almost completely dependant on J for everything but I forged forward on to do a p/t PGCE.
It was almost like I felt if I stopped trying to achieve something with my life I would stop living but after a year I started having panic attacks at just the thought of returning for my second year I literally would go white and shake at the thought of all the travel and work I needed to do… not my first experience of mental health problems but the first since becoming sick.
I took a year out which turned in to several as my panic subsided and the mother of all flair’s hit me, I could barely get out of bed and dress and often just made it to the sofa and no further… months turned in to years… after a while I began to recover from my flair slowly making my way back to some kind of balance although even this was nothing like normal but I wasnt constantly dependant just mostly… lol
During this time J got himself a job working evenings so he could be around to help me during the day. If there was an award I could give him he would be buried under the weight of them…

I decided to try college again and get the elusive PGCE two weeks in to the course I found out I was pregnant which although daunting wasnt so hard as the pregnancy hormones relived many of my fibro symptoms and I was used to being tired… my son was born at the end of my first year and was cradled in my arms while I typed with the other for most of my second year.
J was amazing looking after our son and me and working with little complaint…

When I became a qualified teacher I got a job with the local college on permitted work at last feeling like i was contributing to both my local community and to the family…all was good till ESA came along and I was found fit for work which of course im not… being able to do five hour’s a week does not make you fit to do 30… I went self-employed as I was encouraged to do by work choice everything seemed rosy till J became ill with cancer and im sorry some of this you’ve heard before but im getting to it…
Now having been off work for 9 months while getting over treatment and complications having gone back to work we are faced with quite a bit of debt not least of which debt from housing benefit cock ups… but J now faces redundancy which brings me full circle back to being a burden my total monthly income before tax credit or housing benefit is £150.00 I get low rate care DLA wich is £80 odd a month im struggling to get enough energy to work enough in my business to make it pay at all and at the moment it owes me in materials but now im faced with no income to put anything in my business its a horrible catch 22…

During all of these 18 years we have never had any careres allowance nor care support…

I have found myself wondering if fighting to work the one morning I now do and fighting to keep my business is fair to J if I was on esa id be on nearly twice what I earn now not because it’s a high paid benefit but because im to ill to work enough to earn anything…

Which then brings back the old ghosts those thoughts you try to hide you dare not admit to anyone because you think they may label you or lock you away… and the reason I try to avoid thinking about how my health effects others… the little voice that tells you, you have been a burden long enough that they would be better off without you. That if you were gone that maybe they could find peace and prosperity, if you where no longer part of that picture… that maybe just maybe its been you draining your loved ones that has held them back… it’s at times like these when your thoughts are dark and especially when you have a potential reason for them to go to really dark places…

That fighting to keep that little piece of independence feels less like inclusion and not being left to languish on benefits and more like the milestone around your neck that will drag you under…

Since writing this J was made redundant and has to have two more ops on his knee as his prostetic knee is broken and the tumour and orthopedic specialists want to kill the infection he has while they fix his knee.

In the months while waiting for his op he has been refused esa because I earn to much… lol… you couldnt make it up… so J is trying to sell his art instead and hopes to go selfemployed as soon as hes out of hospital… you can see his work at www.jonathanwilsonart.com
Dxxx

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6 Comments Add yours

  1. Billie says:

    I cannot begin to imagine what you have been/are going through. I also have that little voice. I am in constant pain from a different condition and not getting adequate pain relief saps my energy and makes me a burden. I do my absolute best to remain independent and not to make a fuss, but I have no family within 100 miles and have no friends because of recent move due to bedroom tax. I have a (hated) wheelchair but no ramp in a bungalow that is much too small so I am trapped in a single room. I recently got a smartphone and it is my window on the world. Don’t get me wrong I don’t want to die but I don’t want to think I am a burden to society and carry on as I am. I just want the pain to stop long enough to sleep.
    Anyway I just wanted to say to your inner voice that you are the best mum in the world to your little one and can never be replaced so hang on in there for your “happy ever after” you never know what’s around the corner.
    Billie xxx

    1. ravenswyrd1 says:

      Hi Billy have you contacted sicial services about your place… its seems wrong that your stuck in one room… maybe they could get you a PA to go out more at the very least… are you on FB there’s a large disabled community on there I’m sure folks will be willing to help find some solutions. .. hugs Dxxx

  2. Fiona Dale says:

    Firstly let me say the love you give to a child is hugely under estimated, it means so much. And a child really does need you. I don’t worry about dark thoughts as it can all spiral, I do “plan”out those thoughts as a way of dealing with them, I like to know that when that time comes I’ll be prepared. It re assures me and that way I can get on with the here and now.
    J choose to stay with you and care for you, now you get to choose…I assume you talk things out. Maybe a compromise is you go on ESA for a year,ease the financial burden while building up a stock to sell next year. Who knows what will happen in a years time? Lotto win hopefully 🙂 Just don’t give up, a delay isn’t giving up! Hoping there are better times ahead for you both x

    1. ravenswyrd1 says:

      Thank you so much… im much better today sometimes my dips are breif but its just the acumilation of things building up… I think writing this helped get it out there…. hugs to you… Dxxx

  3. Sharon M-K says:

    Oh my. I so feel for you and am so astounded by your strength. To be ill so young and to raise a child and care for a sick husband to the extent you have is astounding to me. I acquired fibro and bouts of fatigue at 11, but never so serious as to interfere with my goals. I did not get the really bad stuff until 2001 (I am now 63) when I contracted bacterial meningitis and encephalitis. It was like a door slammed shut. I became disabled…denied by my private carried and given by Social Security. It just wiped us out financially. I was so depressed that all I could think of was ending it to free my family of the burden I felt I had become. My husband, Kacz, like J stepped right up to the plate. It bothered me just as your caregiver’s care has impacted you.
    I only recently realized I was thinking incorrectly. Let me explain. The love that he expresses for me in the care he gives is an extraordinary gift to both of us. And the love I give him and my children, the emotional support, is an extraordinary gift to all of of us. They need me…as your child and partner need you. You are so much more than what you can physically do…in some ways, that is the least important part of you in a loving relationship. It is very difficult to see this when your illness is placing such a terrible financial burden on the family. It is particularly hard for us to see this, especially those of us who have the responsibility gene.
    At the time, obtaining disability seemed like giving up. It wasn’t. It was acknowledging the reality of what had happened to me and recognizing that many of the things I thought made me important to my family where not at all what was truly important to them. They want me, not how much I can make. They want me, no how many hours I can work (read zero). As someone who loves them with all my heart, my true responsibility is to be there for them emotionally and spiritually. To listen, to love, to talk to and to work together to understand what has happened to me and it’s impact on all of us.
    You are a very strong woman. You have loved and cared for a child, completed a degree, and pushed yourself far more than was best for you to do so at the time. Please take whatever you can that your government provides in the way of aid. You EARNED it by being such a responsible citizen and you and J have more than earned whatever you can get.
    Take care and take the love you have and use it for strength. I am not going to tell you to feel any differently than you do at this time…I myself, though much better, have very dark days. It comes with the territory. I remind myself that emotional suffering comes in waves. Look for the high points and try to hold on to them. And be kind to yourself.

    1. ravenswyrd1 says:

      Hi Sharon thank you so much for tellibg me part of your story its very comforting to know its not just me… whilst acknowledging how horrible that fact is… I do try to ride the high waves but like you sometimes find myself in the darker waters… feeling much better today despite yet further bad news this roller coaster just never seems to come to a stop… but we will get through it of that im sure… big hugs to you Dxxx

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