Tuesday 1 March 2016

The Pouring It All Out Post...

 
 
February has been a very expensive month for us. I'm not complaining, I'm very, very glad we've been able to buy the things we have. I take none of it for granted. A new bay window, more of my garden plans have come to fruition, and I've squeezed in a new bag from Lisa, and book purchase too. A few years ago our income was so tight, I was constantly worried about paying bills, we had one wage coming in, and we had to watch every single penny.
 
I don't work. I didn't choose not to work. It was never, ever on the agenda for me. I've always worked, since the age of 13, earning enough money baby sitting so that I could buy my own clothes. I left school on Friday and started work on the Monday. The week I left college, I forfeited a holiday with my friend, in order to start a new job. When the girls were little we both worked part time, and looked after them between us, we managed, and every spare penny we had went towards paying off our mortgage early. Now I'm so glad we did.
 
I worked for years with MS, struggling with fatigue, but not knowing what it was. When I was diagnosed, I chose to work part time in order to carry on working, and manage my condition. I tried very, very hard to make it all work. It didn't and four years ago, fearing I would be sacked anyway, I took redundancy and left the job I loved.
 
I can't begin to tell you how difficult this was. I was never defined by my work, but it was a huge part of who I was. I had poured so much of myself into my career, into helping others, that I failed to help myself, and see how the stress was making me unwell. I still miss my job, miss those I worked with...but I don't miss the work stress and the poisonous effect it had on my body. I now know I need to put myself first, and any energy I have, needs to be there for my girls, and their complex needs. If I was to go out to work every day, I wouldn't be able to function, let alone care for them.
 
Here in the UK, the benefit system for those with disabilities, is not fit for purpose. It's degrading and demeaning. It's almost impossible to navigate. It's extremely difficult to get what you are entitled to. It has been conjured up by those with very little empathy for the vulnerable, and very little knowledge of what it's like to live with a condition like MS. It's a system designed to violate, and therefore puts most people off pursuing a claim. Society, as a whole makes those receiving disability benefits feel unworthy, we are sponges, lazy...parasites. These are hard messages to shake off, especially when you hear them almost daily.
 
I've really, really struggled with being on the end of those stereotypes. It's had a big impact on me over the last few years, I'm not embarrassed that I have MS, but I am embarrassed that I claim a small benefit in order to pay the bills. This is despite the fact I worked tirelessly to support others for almost 30 years. How crazy is that?
 
Last year I was successful in being awarded my works pension. It's not huge, nothing like what I would have had if I'd been able to continue working until I was 68, but it has made things so much easier for us. When I left work I was told I couldn't claim my pension, at the time I didn't fight this as I was so exhausted. Now, I'm questioning this decision. I believe I should have left work, not with redundancy, but with my pension.
 
When I was awarded my pension, I felt lighter, someone believed the level of impact my condition had on my life. This was very important to me, meant I could hold my head a little higher. I'm fed up with society trying to make me feel embarrassed or ashamed. I'm not. I can't work, not through choice, but through need. There are many who continue to work with MS, with other condions and disabilities. I did too, for years.
 
So before anyone judges me, or anyone else like me, think how you would feel in the same situation. So many choices have been taken away from me. I can no longer choose to stay in the career I loved. I can no longer choose to walk the hills and dales of Derbyshire. I can no longer choose to walk to the local shop, pick up a basket of food, and walk back with it. I can no longer choose to travel the world as I dreamt of doing.
 
So what choices do I have...to look after myself, and build a life around me which I love, one that keeps me as active as I can be. I can choose not to accept societies stereotypes. I can choose never to take what I do have for granted, especially when I know that there are so many who have so little. So that's what I will do.
 
(I don't really know where this all came from...it's was just going to be a post about how February has been, I had even titled it Hello March...maybe that can be the next post. What I do know, is that I've had a huge amount of support from you lovely lot over the years, and I don't take that for granted either).
 
 
Amanda :) xxx
 
 
 
 
 
 

 

41 comments:

  1. Hi Amanda, What a moving and beautifully written post. I hope it helped you to let off some steam, Even the strongest people are allowed to have bad days. Your posts are full of life and colour and I always look forward to reading them. With best wishes for your health, Lisa x

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  2. Thank you for this honest post. Our society should be judged by how it cares for all its people and sadly we fall so short. It seems when we are most vulnerable, we are least valued. And then it becomes obvious that in fact we all live in a world where the value of a life is always evaluated through a financial lens. I am not a religious person but it seems so unjust, unethical when there is such bounty on this planet and so many in need. Thank you for giving a voice to the frustrations of so many people.

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  3. I admire your outlook on life/carreer/health. It's a journey I suppose. I am a journalist and also can't imagine not working. But a few years ago the constant strain and stress of working in an office environment left me very (very!) ill and completely exhausted. I never knew being exhausted, drained and bullied could leave a person so... well, deflated. I felt I wasn't worth a penny and I couldn't go on. I started working for myself, started my own business and it took me a while, but here I am. Maybe even working more than I used to. But the thing is: I decide where to put the energy, I hold the strings. It's so much better!
    Take care of yourself and remember that 'walking a straight line' is not for everyone.

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  4. Very well put , my other halfs spinal condition is progressive there is nothing to help or improve the situation , he will be wheelchair bound at some stage , he had struggled on with work for quite a few years , until he couldnt continue any more . All we meet with within the benefit system and the public in general is contempt , because hes fat, this has occasioned from his lack of mobility and the side effects of his drugs. But that just drives his despair further , to the point of suicide at one point . The whole media seems to perpetuate the view that the disabled are worthless parasites , these opinions I suspect are driven by politics at its best . Not a jot we can do to change this im afraid

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  5. I admire you, your courage and your right to be respected as human being. Your words are strong and wise ....
    a big hug, xxxx Ale

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  6. Hi Amanda, such a well written and heartfelt post today. I understand exactly where you are coming from and your words can speak for my situation to. I have always worked to through being in constant pain with my hips and back and joints. Born with hip dysplasia it going un detected for the first 18 months of my life. wont go into all the detail but over the past 10 years having major surgery to correct them. Being in constant pain with my joints and muscles to. Then my son was diagnosed with wide spread Crohns disease at the age of 12 years being a single parent and trying to manage that with no family close by as well as trying to hold down 30 hours a week in a job I loved. Then my 2nd husband came along and my health took a nose dive. We decided to see how we would manage on his wage alone. I was diagnosed with fibromyalgia 3 years ago we don't claim for either myself or my son who still doesn't work because of the stigma and because its so hard to apply for to we don't have the energy. Yes its a struggle living on one wage but we just about manage we are not big spenders. So being able to live the life style we are currently is a huge gift and a joy every day and although by the end of the day I can hardly move I feel blessed like you do and I wont let it beat me or stop me wanting to do what I want to do. A silent illness is hard for some to understand and except its not like having a visual illness but its just as difficult. Big hugs to you I told my story here to show that I truly do understand where you are coming from, dee xx

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  7. You don't have to justify it. Not to anyone, and least of all to yourself. If anyone doesn't understand without hearing personal details then they are not worthy of hearing your story. A civilised society does not question giving support to those who need it. The system we have in place now literally kills people. Sometimes disability is obvious and sometimes visible for all to see. We are not doctors and neither are accessors for benefit claims. In effect doctors that work for the government are called liars and benefits are stopped, delayed and refused. It causes heartache, stress, and real physical and mental hardship and harm. The delays involved are literally sometimes a matter of life or death. The man is charge of implementing this shambles should actually be prosecuted for the harm he has caused.

    Everything has to be hassled with and fought over in this country, from getting children statemented to receive the help they need at school, to those needing extra equipment or support for physical or mental illness. The already stressful situation is made far worse by this and the worry tremendous.

    I am lucky enough that I am not personally affected by any of the issues raised but I don't believe much of the press which has a very nasty agenda. It seeks to obfuscate the truth and through doing so divide and rule to isolate the vulnerable and the poor and get the country at large to agree with implementing its horribly difficult and unfair system. As you say it is broken and not fit for purpose. The person who votes for the ragged interpretation of looking after vulnerable people will frequently be heard saying 'oh but we don't mean you' when talking about how undeserved people are. But they do, as we are all the same and we all need a helping hand sometimes and anyone in receipt of any benefit has gone through hoops to claim it.

    I am glad you got your pension, it is in fact no compensation for your health but I hope that is stable at least.

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  8. Go Amanda! Go Amanda! Go Amanda! That's all your bloggy, IG pals cheerleading for you. xxx

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  9. Your post will resonate, I'm sure, with many people in similar circumstances. Everyone should take on board the phrase 'there but for the grace of god go I'. Good for you for making your home and family your priority now xxx

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  10. Much love to you lovely Amanda, you're amazing! Bee Xxxx

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  11. Wow, that's a very moving post, and clearly something you have wanted to clear the air with for sometime. I never judge people as I have a ongoing health issue which you can't really see physically and people judge me on it. I love the photo's you post and the blog you share and look forward to your next post. Take care of yourself and cherish things that really matter to you!xx

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  12. Dear Amanda, I am so sorry to read that you are so ill and the way you have been judged and treated. I feel for you dear girl, it is a terrible disease. I applaud any happiness you derive from the things you like to do and buy, we all need little pleasures in life to bring us some happiness. My son has Primary Progressive MS so I can empathize with you and I am very aware of how this condition affects one's life, making it very difficult to function in a normal way. I am his carer and the disability benefit he receives hardly goes anywhere towards his medication and medical costs. It means that I am short of money to make up the difference, it is all very depressing sometimes and I find it overwhelming since I am solely responsible for his care. He was four years into his medical degree at university with vague symptoms which were not diagnosed for years. He left university as he couldn't cope with the demands of the course and worked part time on the campus in the library and treasury for years but in the end that was too much for him, he had to leave and now he lives at home with me. It is all very sad, he has a brilliant mind and this has robbed him of his life.
    Your photos are beautiful as always, I love your bay window and that sun-filled room at the back of your house looks wonderful and inviting...I can see that Minnie and Otto are enjoying the sun.
    Take care dear Amanda.
    Big Hugs.
    xoxoxo ♡

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    1. I just wanted to add that you don't have to justify yourself to anyone, too many people are far too quick to judge without knowing the whole story. I am very much confined to my house apart from medical appointments etc., I cannot go too far either, or on a holiday and your lovely words and beautiful photographs bring much needed joy and colour into my life.
      Love and hugs,
      Dianne ♡

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  13. Hi Amanda, you've said what so many of us feel. To have to fight for that which we're entitled to when we haven't the energy or physical or mental resources for ordinary everyday life, is hard.

    I hope that when this post is read by those who don't have a disability it makes them think a little more about those of us who struggle enough with ordinary life without the added trauma of having to fight that much more.

    I hope March is a good month for you.

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  14. I am inspired and humbled by the courage and grace with which you and others stride through life. So glad you received the benefits your are entitled to. Best wishes and prayers to you from me.

    Sheri

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  15. Good outpouring. Sometimes that helps. I'm familiar with how that feels. Also familiar with the immense pride I feel when I look at how i make things work in my life.
    And just when I feel most strong and in power I meet someone new (recently divorced and dating) and societies stereotypes get back in to my head.
    Sometimes it is tough to fight them, but worth it, for only we know how the most basic things in life are Olympian accomplishments for us. We value the effort, and the price.

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  16. I cannot imagine what it's like to live with MS. But I had a similar experience when I finished work (a job I loved and worked hard to get) to have my daughter. I took several years off and felt people judged the way we lived. I felt like shouting ' I'm not claiming a penny, I've saved up and we're living like mice'. We really should learn to ignore others opinions because that's all they are, there opinion. By the way, I love seeing little Otto on your blog, he is just so cute!!! Ooh and loving the garden makeover. Sarah

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  17. I have read your blogpost, written so movingly, from the heart. Well done for coming out the other end with a pension and feeling you can stand tall once more. You have had a horrid time feeling not valued by the system and society through no fault of your own. So pleased you are getting things done in the house and garden to nurture your creative side and wellbeing. Onward and upward as my old school house motto said!

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  18. Oh Amanda,i know where your coming from ,ive been disabled for 14 yrs and even now cant accept it,everything you say i can empathise with you,some days are such a struggle ,and most of the time we cope,get on with everyday life the best we can ,then boom ! like you say this post came from nowhere ,sending a big hug to you x

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  19. I think benefits should be based on the number of years you have worked and contributed to society.The present system is so unfair.Never feel guilty about claiming what you are entitled to.You are right to prioritise family.That is soooo important.

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  20. Your home is beautiful. That alone is a wonderful achievement.
    I think you are doing a great job.

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  21. I'm glad you managed to stand up and make sure you received your pension. It must be a relief to know that's there when you need it. I think your managing everything really well, working out what you need and making it work best for you. Clearly a lot of thought has gone into everything and you are tackling several big projects! You say what you need to say, and then let go of those thoughts and enjoy what you are creating and good things ahead. :-) X

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  22. Good of you to write this all down. It helps others Who are not fit to comes in peace with it perhaps. I have Crohn disease and a work for 9 hours a week. Sometimes i tell People i work 21 hours like i did before i got sick. I don't want People to think i am lazy but i don't want to explain everytime, that i am not fit. Nice bag by the way ;-) greetings from Holland.

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  23. Amanada, I have followed you almost from the start so I know how difficult it was for to initially leave work. I'm so glad you have managed to get your pension and it has made your life easier. It is so unfortunate that everyone who is claiming sickness is tarred with the same brush. Don't feel guilty you have contributed over the years. Sarah x

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  24. Anytime you want shout out about all the crap that has made you unhappy in the past WE are all here for you .The people who follow your blog love all that you share with us and I hope we would never be harsh or judgmental.Take care - sending love and hugs -

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  25. Amanda, how beautifully you've written about this. A very good friend of mine is unable to work following an accident and it's horrible to see the hoops she has to jump through for various authorities. No-one should have to go through that, especially on top of coping with a disability. You are doing a wonderful job at making a happy and supporting home for your children, you should be very proud of all you achieved. CJ xx

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  26. I know exactly how you feel, Amanda. I've had ME for 6 years and have been unable to work for 2 years now but have been told I don't qualify for any benefits, even though money is tight. I didn't even get to start my chosen career as when I left uni I could only get shop jobs, and as my illness got worse I had to reduce my hours until I could no longer work at all. Nowadays I feel grateful for what I DO have but it's taken me a long time to get to this point. If I didn't have my needle felt birds or my dog I don't know how I'd cope!

    Take care of yourself. Your post was great to read as it will make others feel less alone x

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  27. Such a moving blog and do not feel guilty you deserve to get the benefits, you are not a scrounger, I know the benefit system is crazy having a daughter wit mental health issues who is unable to work, do they not realise the loopholes etc they create add to the stress so making you more poorly.

    You are ding a wonderful job and so glad you have your summer house and no the garden steps making life easier for you, take care my friend

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  28. Just catching up on my blogs. I didn't see this till this morning. You do not have to justify yourself to anyone, but outpourings sometimes help. It helped me for completely different reasons, but it helped. I was seriously ill fifteen years ago and took a year to recover but nothing like yours. I recovered from breast cancer I found out though who my friends were.
    Julie xxxxxxx

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  29. Good for you Amanda, so well written. This post should be on the front page of every newspaper and a copy should land in the inbox of every MP. It would certainly make people sit up and take notice. xxx

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  30. Well done you for fighting for what you are entitled to. Enjoy your life in the best possible way that you can. You deserve it! Xxxx

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  31. Amanda - not usually stuck for words, I find myself incapable of responding adequately to your very moving post. NEVER be made to feel guilty! You have pulled your weight and due to circumstances you'd rather not have experienced, you 'retired'. Well good for you - silly to struggle on, not being able to give of your best and wearing yourself to a frazzle into the bargain.
    I don't have illness issues myself, but I retired at 59 because my 60 year old husband was taking early retirement form the NHS - we both have given more than we needed to this great though failing institution. We- through our own hard work and diligence - find ourselves a little better off now than we have ever been. Once we've done the parent/grandparent thing about supporting them, we are now enjoying spending some dish on making our own lives more comfortable - hence, like you, we have forked out a fair amount over the last 6 months on the house. And loving every minute of it! We've future proofed our home (as much as you can) it is now warm, dry and light, and my working space - mostly the kitchen - is having a bit of a refurb and I'm loving that too!
    Carry on and enjoy the fruits of your hard work! And more power to your elbows! Lxx

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  32. A courageous and heartfelt post. It is sad that the press, society and the 'system' has made you feel like this. Big hug. M x

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  33. That is wonderful that you can tell us; your blog friends how you feel. Please know that it had never entered my mind that you should be working. When you said you had MS I felt Joy that you were at home. You have so much to deal with health wise that you need to have the energy for your family when they are home. Remember that what you are being true to yourself and your family. I'm sorry the employers, government, etc. are so uncaring about the needs of the people. Sad. You are amazing (just from your Blog I can tell that) and you must do what you body and mind tell you is best for you and your family. I look forward to your posts so you are blessing me with this. You are also blessing so many others.

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  34. Please do not feel embarrassed for claiming a benefit that you are genuinely entitled to. The system is hard and cruel for those who deserve it, many cheat it, they should feel embarrassed. Nurture yourself and your family. Enjoy what you can, while you can and when you can. (I appreciate your benefit paragraph as care for my 30year old daughter who has had severe ME for 16years, we are in it and I do have some understanding of disability and fatigue.) Take one day at a time, the ups and the downs.

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  35. Oh Amanda, you are always so bright and cheerful, everyone needs a moan now and again. I have Systemic Lupus and fibromyalgia and know a little of what living with disabilities is like, it is so easy to feel worthless. I have just opened an Etsy shop hoping that I can feel as though I am contributing something through selling the things I love to make. Take care, hugs. Sharon X

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  36. Hi Amanda, I just wanted to say I can relate to your feelings. My Dad suffered from MS for over 40 years. He had to give up work in his 50's having worked in manual jobs where he did 12 hour and longer shifts from the age of 14. He had never been well off, but said when he eventually got disablement benefit it seemed mad that this was the time of his life when he was better off than he had ever been, but my Mum had already died and he was not well enough to leave his little rented bungalow to spend it. He had definitely earned it and so have you. Best wishes and I hope you carry on keeping as well as possible for as long as possible. Ruth.

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  37. Thanks for writing such a honest post, like you I worked full then part time with a ME diagnosis until the point I couldn't anymore even working for a while in a electric wheelchair, in hind sight not doing myself any favours as now my ME is severe but the benefits system here in the UK is just so hard brutal and unfair, in recent years, to be made to feel like scum just for being ill truely reflect so badly on our country and it's government. I'm waiting on reaccessment for PIP at the moment as my DLA which was awarded for life is being converted. Take care of yourself lovely

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  38. I couldn't comment last night when I read this as I was on my tablet and the keyboard and I don't get along. Amanda, it is just as hard here in the states to get disability benefits as it appears to be there. When I lost my last job, I had been dealing with RA for about 3 years and the doctor and I hadn't found a medicine regimen that was helping in any way as yet. I applied for benefits because of RA and because I have joint damage in my shoulder which makes it hard to raise my arm. I was turned down. I had to see a doctor of their choosing and he made me do all sorts of things, walking a straight line (which I couldn't do) sit down, stand up, he checked my mobility in my joints and squeezed my hands at which point I yelped and said, "That's very painful!" I was still denied. I eventually had to get a lawyer to get my benefits but luckily, they are guaranteed. I don't have go through anything again to qualify. I wish you luck. You certainly deserve benefits. Having MS is not something that can be brushed aside. Hang in there.
    Hugs
    Sharon

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  39. Big, big, big H&K, Amanda. I have red the post, "following" the nice enamel yellow teapot that I like very much and I have red all this...I am very sorry...
    Miriam

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  40. Hi, I am catching up with my blog reading and this post really hit home. My Hubby (MSer) is just taking ill health retirement from work. We've been waiting since December to see if they would agree to it or not and finally got the news last week. At the same time, we were selling our house (we finally moved to our bungalow) on Friday, filling in PIP paperwork and my Mum was diagnosed with Terminal Cancer. The biggest stresses from all that was the PIP paperwork and that is so wrong that blooming paperwork for help was more important than my Mum's illness. I HATE that you are made to feel like a second class citizen in order to live. Whoops, sorry it makes me vent too. I am pleased you got your pension - can you claim the last four years worth too?

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