Overwhelmed…

I’ve been really struggling with the guilt a lot lately. It doesn’t help that my pain levels are off the scale but that burdening feeling has been a damn nuisance to get shot of. It’s hard having to rely on other people so much and the help I receive from my girlfriend and closest family is overwhelming. I can’t get out to the shop, do my own washing, cook a proper meal other than a quick ding ding dinner as I can’t stand long enough and I’ve forgotten how to hoover as cleaning is completely out of the question. I’m realising now how obsessive I’ve been with cleanliness throughout my life and not being able to do it myself leaves me unsettled and agitated. But all this is just secondary to what’s going on inside my body and my condition seems to be deteriorating faster than ever now. I can barely get from one room to the other using my crutches and the burning is getting worse – it really does feel like a layer of my skin has been ripped off – on the pain scale an old 10 is now a 5 and it’s hard not to let that worry me, I can’t even begin to imagine what a 10 on the scale will feel like months from now…

I’ve also been doing a lot of research on my illness which hasn’t been easy – the more I’m learning about CRPS the more I’m realising how unlikely it is for a full recovery given there is no cure once it’s progressed and the lack of awareness and public funding means little research can be done – this makes living with the illness all the more harder deal with. If it was recognised for what it is – a crippling disease with immeasurable pain then at least the prejudice would be one less thing to deal with…

So over on a website called Burning Nights  Victoria is trying to establish the first registered charity for CRPS in the UK – she needs to raise £5000 in order for it to happen and I want to help in any way I can, so any ideas on how I can help raise money towards this from home (very unlikely I know) would be great – even if it was just a small amount. A fellow CRPS sufferer she met, herself and 6 other people with the disease also succeeded in setting up an All Party Parliamentary Group (APPG) which is to raise awareness to all MP’s at every party in parliament, I’ll be writing to my local MP to try and hopefully get him on board – she’s a true inspiration, you should head over to her site and take a look…

Okay, well thanks for reading…

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15 comments

  1. You should see a small symbol of a chain link, highlight the address you typed and click the link, a box that says text and one for the address, so you could type burning nights and that will be blue and clickable or you see some people put click “here”, I just use the address as the clickable link,
    As for feeling guilty, your girlfriend and family clearly love you and want to help, if you are concerned ask, I know that is scary as we are worried they will say something we don’t want to hear.
    It sounds like one of those robotic hoovers would be ideal!
    I hope you get a little relief from the pain soon, is it a flare up or just a progression?

    Liked by 1 person

    1. That’s great, really appreciate your help with that, managed to get it sorted thanks to you.

      I know if I asked they would be very reassuring – they care a great deal for me and just want to see me happy. I’m pretty sure they don’t see me as a burden I just can’t help feeling it, it’s something I need to get over – I just struggle accepting that I need all the help I can get as I’ve always been so independent.

      It’s definitely been a flair up and they seem to be getting longer and longer the more my muscles deteriorate and more painful – if only it was progression – hopefully one day that will be the case and I’d be the happiest person in the world…

      Thanks again for your help…

      Liked by 1 person

      1. I just had to go back and look at my comment, I meant progression of the CRPS as in getting worse. Probably not the right word lol.
        I often feel guilty, like when my wife cuts the lawn (it’s big) and cleans the windows or anything that I used to do and she now has to do. I also feel guilty that we no longer have a social life or go on holidays, she says it’s okay but I still feel bad. I also feel bad that we struggle financially, years ago I worked as an contract aircraft engineer and I could give my family a very comfortable life and now that one hours wage is so much to us.

        Liked by 2 people

      2. Oh I see, I don’t think you used the wrong word the, could’ve been read either way I guess…

        It’s awful isn’t watching your loved one do near enough everything that needs doing – I’m with you on the social life too – my girlfriend has never been one for going out but she does like to sometimes and I try to urge her to do it. Same with the holidays, I can’t go abroad anymore, it would take me the whole holiday to get over the journey there then it’s time to come back, lol, pretty pointless but Deb’s still goes abroad on her holidays – she loves the sun. My dads had a house in Spain for years and I’m yet to visit him – I’d love to go for a full summer as once I’m over the flair up from the journey, there’s still plenty of time to enjoy the change in scenery and sun but there’s no way I can manage the stairs there – if only it was a bungalow, lol, i’d be out there permanently probably…

        Sorry for your financial struggle too – it must be really hard going from a well paid job to relying on benefits – especially with a Tory government, Jesus. God help us!!!

        Liked by 1 person

      3. Especially as the now appointed minister for disabled is anti benefits, I just wonder how they get away with doing these things, its not like it’s hidden and yet people voted for them

        Liked by 2 people

  2. What a bravely and courageously written post and It is so so tough on you and your loved ones that your condition is getting worse. Wishing you every success with your fund raising, too. Hope goes well. Continuing to think of you and your tough ordeal and hoping some glimmer of hope might appear on the horizon for you! Take care.

    Liked by 1 person

    1. Thank you for that. Yes it’s a tough road this and hopefully I can come up with something to get the fundraising underway, I’ll think of something! Still can’t believe how few people know of this illness but all I can do is try to change that. Thanks again, I’m truly grateful for your support…

      Liked by 1 person

      1. Yep more folk need to be made aware of this and if you even come just a little way towards that goal you will have started the ball rolling…hang on in there and very Best of Luck.

        Liked by 1 person

  3. I think getting involved in fundraising will be a great way for you to focus your mind. A counsellor once told me this. “Guilt is anger that is not at anybody so you throw it back at yourself unjustifiably and that is why you feel guilt.” Something a friend told my husband that really helped him too was that it’s good to be angry at the disease/illness. Angry at what it’s taken from you and how it’s screwed up your plans for life and you need to let that anger out and accept that anger. Don’t let it eat you up as guilt! I think for us sufferers of pain related illnesses that’s a hard ask but one I’m striving to do. We didn’t ask for this shit did we? We didn’t do anything wrong! We did nothing to deserve this; shit just happens. You can’t feel guilty that you can’t do those things cos it’s not like you can change the situation is it? Like I say shit happens? Do you claim PIP. And ESA etc. I just wondered if you’re claiming all you can; could you afford to pay a cleaner for just an hour a week to come and do some of the worst bits that get in the way and make you feel the most guilt? That’s partly what PIP is meant to be used for? I’m lucky I get a carer because I have young kids and it’s changed our lives! Then you can focus on all these great fundraising ideas. Distraction is a great pain reliever…..good luck as always x

    Liked by 1 person

    1. I agree, I think it will help and certainly give me something to focus on. The councillor has wise words and I love the quote. The guilt is something I’m working on and I’m starting to learn that it’s not doing me any good allowing it to eat me up – I’m beginning to accept what is and feel more in control of my emotions – only slightly mind, I have a long way to go yet but I’ll get there… Yes I claim ESA but waiting on whether I’ll get my PIP – I actually have someone coming around next Friday for an assessment – there’s absolutely no reason why I’m not entitled to it and surely they will see that when they come to visit and see how much I struggle… I’ve thought about a cleaner but don’t have the funds yet but hopefully I’ll be able to get one in the future… As always thank you for your message and support I’m forever grateful… You take care…

      Liked by 1 person

      1. I had my PIP assessment from my bed! There was no way I could get up that day and there was no way she could argue or even ask me to do all the tasks. It still took an hour but I am a complicated old bird! Just don’t brush over anything. Make everything the worst it possibly can be! That’s what they need to see. I got enhanced mobility first time and then I got normal daily living cos I can do my maths and read/write and stuff. The idea then is that you can use PIP to get a cleaner. We use money for a cleaner once a fortnight for 3 hours but I have a PA every day that can do bits. You could have more regular but for less time. The going rate is about £8:50-£9-50 pr hr I think. You might even know someone that would be interested in doing it for you?? Don’t let that guilt eat you up. You have so much to give this life still! Keep up the fight. Sending strength as always xx

        Liked by 1 person

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