Am I a Burden????? Who decides????? What do you think?????

This is a question I find myself answering yes to fairly frequently. I was however challenged the other day that not only is the word very negative but that it is also completely wrong. I resolved to  discuss this as along with guilt is probably the biggest thing mentally that I have to get my head around.

You see my day relies so heavily on others who do so much for me and never complain and that change their lives to help mine be a little easier. It is very humbling that I have such a good support network of family and close friends but sometimes I think they should shout NO NO NO NO NO at me for being such a burden. I’m not just talking about the day to day things that my wife does to help me, you know helping me to shower and dress, carry breakfast, make my coffee, do most of the housework, and countless other day to day tasks that I guess come under the “sickness and health” vow that my wife took! What I mean is the stuff beyond that.

Our children have grown up with a disabled parent, for our LG she has never known any different but our son who is now 18 he has experienced the deterioration and had to pick up his fair share of extra household tasks. This last year he has been my chief coffee maker during the day along with Chef four days a week and many other little tasks. I feel guilty about how much he has HAD to take on board and I am sure I must at times be a burden to him, especially on the days he misses seeing his GF because I need him at home. The irony here though is that if I wasn’t disabled we would still have been teaching him the life skills he has been learning. So why do I feel like a burden, well largely it is because I’m a prat, no seriously it is because some days it is forced upon him and not a choice and that seems unfair.

Then we move onto my LG who at 2 and a half is already my picker upperer (is that a word, the red underline tells me not but hey you get what I mean), if I drop my keys, phone, wallet, walking sticks and so on and so forth she picks them up for me. She fetches my trainers before we go out, has to accept not being picked up and carried (although she does get to ride around my mobility scooter), pushes me and or trolleys when the two of us go shopping, has limited play time with me as I can’t get on the floor very well, and on days where my medication levels are like they are currently has to be shipped off to nanny and grandad as I can’t cope on my own all day 😦 how depressing is that. I am hoping that with the current changes in meds that are being implemented that this will at least change over the coming months and she can be home with me, but then it’s the guilt of her having to play on her own for some of the day. My care needs are going to remain the same and deteriorate at an unknown rate for all her childhood. I am sure she won’t win many cool points for me rocking up on my mobility scooter, maybe the tattoo sleeves will win some back. I want her to enjoy her childhood and not look back at it as being my carer. Now if you were ever to meet her you would see that she is a very happy child, talks incredibly well and far beyond “the norm” for her age, runs to help me up out of my seat and to get my socks and shoes etc, has a fantastic imagination and gives me huge cuddles and tells me she loves every day. I still however feel that as she gets older and sees that her friends don’t have to do all this stuff will she resent doing it for me? Crazy I know but a burden nonetheless.

Then there’s the financial burden on my family having spent thousands on all the different aids I use daily, forfeiting family holidays for my hot tub, motability car and mobility scooter. Again I know all the family use the tub and that our LG and I have some amazing play dates in it, and many children enjoy the scooter but my wife works very hard over 55 hours most weeks (she is working unpaid now as I type this) and it doesn’t seem fair she has to deal with all the stress in her job to get me the things I need!

Even our children’s Grandparents make sacrifices for me. My mum and dad at times are a family taxi service (although they don’t get paid so it’s not a sustainable business), my in laws have helped financially and both with running around doing shopping for us. My parents regularly shop for our fresh fruit and veg, look after our LG and even plan their days out and holidays around knowing when I have people to care for me. This seems very unfair and like I am a huge burden. Although talking to a Nanny at my Pain Support group, she has helped to reassure me that as a grand parent helping out and having her grandchildren makes her very, very happy so maybe it is less of a burden than I think :/ oh emotions are all so confusing and I haven’t even started on my friends yet!

I am best man at a wedding next year and part of the Bride and Grooms criteria for finding a venue centered around the disabled access ramps and how easy it would be for me. Overwhelmingly amazing but have they settled for somewhere because of me, making me a burden on their day. The stag do is also much closer to home due to my inability to travel great distances over a weekend. Now the groom is a big brother to me, I love him with all my heart and if the situation was reversed I wouldn’t bat an eyelid at any of this, but it isn’t it is me imposing restrictions and that isn’t right!

Finally we come to all our family and other close friends who plan days out around me, put up with me cancelling last minute if I am out of spoons, come round on their days off to baby sit me bringing lunch and making their own drinks when they do, plan days around my mobility aids, push me around in my wheelchair, holiday locations, changing what we do when we go out, finding eating places (surprisingly difficult), loading and unloading the aids in the car, and probably 101 other things I have forgotten. See Seachy Waffles on…… is a good title.

Now we get back to the title of this blog, who decides if I am a burden. I’m sure if you asked any of the people mentioned if I was they would all say no, however that doesn’t stop me from feeling like one. I also like to think that I have lovely friends and family, and that in turn means they would know that saying I was a burden would reflect badly! I will never be able to thank everyone enough for all that they do for me, I will probably never get rid of the “burden” tag I feel, but what I hope I can be is be there for my family and friends as much as they need me, and maybe that is all any of us can ask for…………….

8 thoughts on “Am I a Burden????? Who decides????? What do you think?????

  1. Its crazy how the mind works, I know what people have said is true when I read it, but you can guarantee next time I say no, or ask someone to do something for me the guilt will kick in x

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  2. Let me say a couple or three things – Point one, you can’t force an 18 year old to do anything he doesn’t want to – he would just walk out. Point 2, LG is so fortunate – if both of you worked full-time she wouldn’t have you around so much. Point 3 – my nephew has just arranged a wedding around two elderly grandparents who have similar needs as regards access, so that situation probably crops up much more often than you think. Point 4 – you must be well regarded by all the people who help you, or they wouldn’t do it. Count your blessings…

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  3. Thank you bro, not sure my wit is razor sharp now with all the meds, but thank you. Love you bro and you are here for me whenever I need you so stop worrying about that!

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  4. I understand your feelings and emotions around feeling, as you put it “a burden” which is, as you rightly say, a self imposed title as no one sees you as that.

    We all see you as “you” are, without titles, labels, or constraints for that razor sharp wit and humour, someone who makes us all laugh and see what’s inside ourselves that needs acknowledged too.

    Each and every one of us want you in our lives and I’m sure that they (like I do) don’t think about it any other way, just as you said – not batting an eyelid.

    Your last comment really hits the nail on the head as I’m sure we all just want to be there for our friends and family – hell I wish I could be there for you more than I am, and mostly thats because I miss you and want to do all I can to help.

    The biggest wish I have is to truly help you understand that you aren’t a burden, so that you don’t feel that way about yourself.

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  5. Brilliantly put, sometimes we give ourselves too much of a hard time, and I think you do, you are a real asset to our group, great support for Dan, making us laugh and sometimes nearly in tears with the antics of your LG. You sound like you have a loving family, who treasure you. If you had a job that took you away and you worked long hours, never able to make those school sports days etc, that would certainly be worse for your daughter. Take it from one that knows, my parents never came to school things, I used to search the parents to see if mine turned up, I can still remember the disappointment today at the grand old age of 59…. What you give your children now is you, and your time, invaluable. I vowed I would always attend my children’s and now my grandchildren s special moments, my children now 34 and 37 talk more about the things we did together that cost nothing, just time and a little imagination, you are providing those things at a higher cost to you, be proud.

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  6. I don’t think anyone who cares about you ever thinks your a burden they may share your frustrations from a different angle but they love you and that’s why helping you is never questioned or considered a burden. Netherless for you it will feel like this and it’s extremely hard not to feel like this, but give yourself credit asking or receiving help is a massive thing so you should be proud of that. Niamh is a credit to you & your lovely wife and her kindness comes from your tuition and Guidance and gives her a better understanding that not everyone leads life without problems.
    Now why don’t you consider using your wealth of knowledge to blog to others in need of finding venues with good disabled access… Weddings or toilets… The best shops.. The best ramps to do wheel spins on I dunno the list is endless ……..or maybe even a blog about politics come on Seachy you are a Jedi Seach after all xxxxxx

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    1. Thank you LadyLowe, and I have to say I am loving the idea of rating all the places I visit, what do we think marks out of 10 considering for…….
      Wheelchair Access
      Maneuverability inside/down aisles etc
      Toilet Facilities
      Understanding/Helpfulness of Staff
      Pay machines low enough to use

      Can’t think of any more at the moment but will have to be a whole separate part of the blog xx

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