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…………….