Friday 29 July 2016

A Picture A Day...29

 
 
 
I need to get my feelings out, and in order to do that, I'm going to wallow. Please move on if you want too, and don't read, I wouldn't blame you. What I'm going to write is really one of those first-world problems we read about, i.e. most of the people living on this planet wouldn't see it as a problem, they'd just be bloody grateful to be in my shoes. I think when you have a condition like MS you can feel vulnerable, uncertain about the future. This picture above is the back of my house, I just wish it looked different, and here's why...
 
 
 
I've accepted the fact I have MS, I've accepted the fact that my mobility issues stop me from doing the things I once enjoyed. I know, in comparison to many others with MS, I'm actually doing ok. I've accepted the fact that I can no longer earn a living the way I did before, and that our lifestyle isn't what I hoped it would be. I'm trying to accept the fact that we won't be able to financially help and support our girls, in the way I thought we would. (But then neither my husband, or I have ever been in the position to be supported by our parents, and we managed).
 
 
 
I've accepted a lot over the past few years. I've managed to cope, and carve out a new life for myself and my family. I love my home and the area I live in, and always thought we would live here, until our girls had grown and flown. This house, as it is now however, can't support my changing mobility needs. If I stay the same as I am now, everything will be ok, but if things progress, like they have done over the last five years, well my home won't offer me the accessibility I need.
 
 
 
Now for the bit I'm really struggling with. A few years ago, the authority I worked for didn't follow correct procedures, and because of this I've lost out on tens of thousands of pounds of my pension pot. With that money we could have extended downstairs, and made my home, accessible for me, whatever my changing needs become. Up until a few weeks ago, I had thought that this would happen. I now know that it won't. None of this is my fault, yet I'm the one living with those consequences. It's seems so unfair. I have a insecure future, just because someone made the wrong decision. Last week when I was ill I got stuck on the stairs, it's made me realise how difficult things can get.
 
 
 
I'm really struggling with this, and as much as I try to shake off the injustice, it still keeps grabbing hold. I've really got to let go and stop, STOP, thinking how things could have been. I keep going over how it could have been.
I COULD have had a house that was fully accessible.
We COULD have lived here all our lives, if that's what we wanted.
We COULD have had a little extra each month, to support our girls through their education.
I COULD have had not only a lovely garden, but also my lovely greenhouse.
 
 
So as you can see, I'm in a period of grieving, not for a person, that's much harder, but for a better future. However, I really do believe that everything happens for a reason, to teach us something. Are these lessons I need to learn?
 
1.To be less greedy, and be truly grateful for what I have. I've got so much good in my life, yet I'm wanting more. There are many people in this world who don't even have a home. I really need to learn to be less selfish.
2.If I did have an accessible house, then would I become lazy? As things are now, I know I'm up against it. Just this last year I'm able to do less, but I push myself every day, I never give in. I push myself to do things because if I don't then is the next step not being able to climb those stairs. Perhaps by not having things easy, it's making me work harder to stay mobile? Maybe that's why that person made the wrong decision?
3. Life doesn't always deal us the cards we were hoping for, just switch on the news and you see that, look at all those innocent people killed and injured just lately, they would never have imagined the card they were dealt. I'm alive for goodness sake, isn't that enough. I really do need to get my act together, don't I?!!!
 
 
So that's today, just how I'm feeling warts and all. I'm sorry to rant, but I found when I've wrote about stuff like this in the past, it's really helped me to move on...fingers crossed. My husband keeps telling me to get in the real world, and he's right, I'm a great dreamer, and believer that people will put right what was wrong, but that's not always the case. I've got to stop with the 'could haves' and concentrate on what I do have, a beautiful family, loving friends, and a bloody fabulous garden!
 
 
 
Have a great day, tomorrow I will be posting happier pictures, and happier thoughts! (and well done if you got to the end of this!).
 
 
Amanda :) xxx
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 

42 comments:

  1. Amanda, I'm so sorry this has happened to you, it sounds totally unfair and I completely understand how infuriating it is. I know I would be obsessing over it if it was me, and I honestly think you are dealing with everything brilliantly. You're not selfish at all, very far from it. It's only natural for there to be things in life that we would like to have. I'm sending you a hug and hoping you have a good weekend. CJ xx

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    1. Thanks Caj, I've always got very angry with injustice, even as a child, but I've got to move on from this. I do think if you open yourself up to learning life's lessons then you will be taught them, some being hard! It will be fine in the end, and if it's not fine, it's not the end! ;) xxx

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    2. I love that "fine in the end" quote it has got me through some utter #*@*
      Just because we know we are blessed doesn't mean we won't go through a bereavement period for things we have lost. I think this even more so when a chronic illness is involved as we know all too well that life can go completely tits up (sorry!)if our condition declines.
      I have mentally re-designed this house should I end up staying here -stair lift and walk in shower. But as you say those stairs are keeping me a bit fitter than bungalow living ~at the moment.
      Chin up chuck and thanks for sharing. I haven't been reading your blog for long but you always inspire me to keep on keeping on.
      L.x.

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    3. Thank you Lynn, I will just keep on doing what I am and not let the situation grind me down! ;) xxx

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  2. You have every right to be upset and to grieve, life isn't fair. I to am grieving for a lot of things I am giving up. I hope you feel better soon and more able to cope with the forthcoming changes.

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    1. Thank you my dear, we aren't on our own which helps, I will cope, I always do, just having a little shout and foot stamp! You take care, and thank you for being there :) xxx

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  3. I too am really sorry this has happened to you. Sounds like you are grieving, be kind to yourself. What would you say to your best friend or your daughter if this was their situation?

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    1. Oh my goodness, that's so true, I'd be the first to say don't be so hard on yourself, be kind to yourself! I've got every right to have a tantrum, after all it's my life that's been affected. I never tantrum for long though, thank goodness. Thank you :) xxx

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  4. Moan, wallow, sulk and yell all you need. Bottling everything up doesn't help-trust me i've tried it. Let it all out, shout, swear and cry if you need to. Then give yourself a big pat on the back and say "Yes, I've come through, and I am strong", Because you are, strong and inspirational! Much love xxx

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    1. Thank you Lisa, I always feel I shouldn't moan and complain because some people are much worse off than me, and that s true but actually it's much healthier just to shout and then move on :) xxx

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  5. I agree, this totally sucks and of course you are upset about it, I would be too. It's certainly true that the more you do, the more you are able to do. I've seen people who don't try each day and I don't think it's made them happy to be honest so I guess that's a positive of a small sort. I hope you find some more positives soon.

    S xx

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    1. Thank you my dear, I have lots of positives, I don't need to find them Sandra they are already there ;) keep on keeping on, one foot in front of the other! :) xxx

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  6. It is good to talk about your feelings, don't bottle it up , take care xxx

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  7. Reading this has made me so angry that someone else's incompetence has and will have such a huge impact on your life ...and they will not have to live with the consequences of their actions..but you do..and it sucks. I truly believe you are an inspirational woman whose determination will not stop her from living a full life in the lovely home you have created. I pray that your mobility stays stable and that somehow the adaptations needed in the future will be possible. I have a severely disabled son and we had to move to house ..a house I loved so much ...to make way for a new house full of adaptations and accessibility and now we are here it does feel like home. Life moves in ways we don't always want at the time ...but after ..when we look back ...change (by bringing us out of our comfort zone) can sometimes make way for different and sometimes better things...things we could never envisage at the initial point of anger and grief. Feel free to allow yourself to rage and grieve what should have been ...but then let that energy move you forward to a better place. Sending you huge hugs and love ...be gentle on yourself xxxx

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    1. Thank you Clare for sharing your experiences, when one door closes there's always another that opens, I've hammered good and proper on this door but it's well and truly locked! ;) xxx

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  8. Bless you, love. I understand the grieving for 'what should have been' as I do this myself. You are very entitled to have bad days and are allowed to voice your emotions. My hub and I cannot help our three (due to his financial f*ckwittery grrr) but we do love and care for them and help them in other ways as they move through life.
    My sis in law has really bad MS, she is younger than me. She uses a stair lift to access the upstairs despite having a bedroom/bathroom extension downstairs as she still wants to be 'normal'.
    Take care, my darling.
    Susan s
    PS Life is a shitfest and as long as there is enough toilet paper in the world we can deal with it ;o)

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    1. Ha ha...I've loads of toilet paper don't worry! ;) xxx

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  9. I think you have every right to feel that way, so vent on. I am an OT and have just had to leave social care through illness/disablity. Have you consulted a lawyer about making a claim against the LA/pension company? It might at least be worth seeing the CAB about it, but you may possibly have a claim because their negligence has left you wanting. As its stands its probable you would not be eligible for a Disabled Facilities Grant if your husband is working so you may have good grounds for a claim. Also just worth checking with a builder that the type of adaptations you would envisage are technically feasible at your current home, because sometimes there is a building obstacle you might not have realised would prevent your aspirations from being possible. On the plus side it is so great that your MS sounds well under control and you have found a way to make your life positive. Take care Juanita xx

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    1. Hi Juanita, thank you for the information. I work very hard at keeping my MS manageable, it's got a tendency to be aggressive but I keep it in check by living healthily I'm sorry you've had to give up work, I have though about contacting a lawyer but honestly, I'm not sure I could cope with the stress of it all, stress has a negative impact on my MS. I was hoping the authority would hold their hands up, apologise and set things right, but they are as strapped for cash as a lot of us are. I alway gave over and above with my job, I think that's why I'm in this situation now, but when push comes to shove we are just numbers to them :) xxx

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    2. If you were a member of a union when all this happened, it would be worth contacting the union to see if they can help you sort this out. You may not be the only person it has happened to, and they may well know far more about what went on than you do. Just a thought....

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    3. Hi, ironically at the time I did contact Unison, I was advised that the council had changed policy and no one got their full pension anymore. I've since learned this isn't true but didn't question it at the time, I was too ill to argue and just accepted what everyone told me! :) xxx

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  10. I think you can cope with anything if you feel it is fair.Obviously with you it wasn't and you have been dealt a rotten set of cards(in more ways than one).I look back a lot and think "what if I had ..."but we have to be thankful for what we have.Children that love you,a lovely garden,husband ,enough money to get by.But it is still a b-----r!Try to keep smiling.

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    1. I will, much better than a miserable face! ;) xxx

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  11. I am very sorry you have to face blatant injustice on the top of everything else. You have all right to complain, it makes me angry just reading about it. And I wouldn't call it a first world problem - injustice isn't something irrelevant. I think you are dealing with it very well xx

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    1. You are right, it isn't irrelevant, well not when it has such a huge impact, thank you :) xxx

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  12. Hi Amanda, so sorry to read that you are having a hard time at the moment, but you always read as a very opticimistic person so I am sure this feeling will pass. Somebody gave me this advice when my husband very unexpectedly died at the age if 52 and I was devastated and on the verge of sucide, she said try and focus on someone who is worse of than you this will help you pull thru which I did, the girl I thought about had been left a widow at 30 and had three boys under 8, I was lucky my two children were adults and out earning a living. It really did help and I hope things will turn around for you, you seem to be a positive, caring person so I am sure you will be okay. Thinking of you.
    Hazel c uk

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    1. Thank you Hazel, I'm sorry you were all dealt such a huge blow, sending a hug :) xxx

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  13. Dear Amanda. Unfortunately there is no rule book that says life has to be fair. Don't feel guilty and selfish ... you are a human being not a saint. All the emotions and sense of injustice I have been through as well. A good rant about things is necessary for you and therapeutic! Perhaps one day we will all have "everything" revealed/explained to us. Meanwhile be sure in the knowledge that you are a lovely person, a super mum and have caring thoughts for all. This in turn means that you are loved. Not everyone can say that about themselves at the end of each day. Hope tomorrow will bring you peace and calm. Lots of love Paddi.X

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    1. Thank you Paddi, I know I have so much love around me, it helps everyday, keeps me going :) xxx

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  14. Sending a huge hug.

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  15. Amanda you have shared your feelings and thoughts so well with us all today and I only wish I could wave a magic wand and make you house extension happen. Everyone has expressed so well what I feel but I do not have the words to do it myself but thinking of you and your DH and girls.
    Come and enjoy your holiday here in Yorkshire they say it is God`s county so He will be with you whilst here.

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    1. I like the magic wand idea...can't you get them from Amazon?! ;) thank you, Yourshire is a beautiful county :) xxx

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  16. Soul destroying , you just see a little hope for the future and the rug goes from under you yet again . people don't grasp that a degenerative illness eats at more than your physical well being , sometimes it's bleeding hard to plaster on a smile and say it's all fine , so feel free to have a grump whenever you want

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    1. I really believe in positivity but I've been slapped down so many times with this issue, every time I thought it would get sorted it didn't, annoying really doesn't cut it! ;) xxx

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  17. Hi,

    We had to move to a bungalow this year to help my Hubby (who has MS too). We left the house of my dreams for a grotty bungalow, which I know in 12 months will be lovely. At the same time, he was told at work to either go down 2 grades or leave his job. At the same time my Mum was diagnosed with Terminal Cancer. Those were a few fabulous months!! What I wanted to say is that months later, My Mum is doing ok, Hubby is very happy to be out of work (thankfully fully pensioned off at 42) and the bungalow makes his life so much easier - even if we still have to sort out a ramp, wet room etc. Have you thought of seeing if you qualify for any grants to build an extension - I know people in a group I am in, are having help to make their houses accessible (I am sure there will be hoops to jump through - the irony!), but I know there is some help out there. Perhaps that would be less stressful than seeing a solicitor about the injustness of the pension issues. I hope it all works out in the end, even if you can't see that at the moment. x

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    1. So much in such a short space of time, I'm so glad it's working out for you. I'm hoping I stay at this level and don't get any worse, at least then I can get around inside even if going out can be tricky. I'm not sure about grants, I know we could get grip rails etc, I know I'm better off health wise not working and I do have a small pension but it's nothing like what I would have had if I had got my full pension. I will look into grants, thank you :) xxx

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  18. Dear Amanda, I am sorry that you are feeling so down and worrying about the future but go ahead and ventilate get your feelings out there. Having MS is a bitter blow for anyone and robs the person of so much. I understand being the Mother of my son who has MS and how debilitating it is. It is not selfish to want things, most of us want more than we have, these small material things can brighten our day and make life bearable. I wish you all the very best and hold onto those dreams, they might just come true.
    Much love, Dianne. ❤️

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    1. Thank Dianne, just to live all one one level would be fantastic, no steps to worry about, not to be so l shall just have to keep these legs going! Sending my best to yourself and your son :) xxx

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  19. Have you spoken to the Pensions Advisory Service? It's a free service. They might be able to discuss whether you have a chance of getting any compensation.

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    1. Hi thank you yes I have contacted them, I need to send all my info to them and they will look into what happened, not sure if it will help but worth a shot :) xxx

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Hello! Thank you so much for leaving your thoughts and messages with me. I read each and everyone and will try and answer any questions as quickly as I can! :)x