After writing the most personal blog I have ever written about relationships (http://www.martynsibley.com/life-love-relationships) and balancing the sharing of these experiences with keeping a bit of myself and appreciating other people’s feelings too, it got me thinking. I believe whole heartedly in talking about my experiences of being disabled to create discussions with other people. Whether this dialogue leads to solutions for disabled people, or achieves getting members of society to re-evaluate their perceptions of disability too, its important! So where is the line? See, I have been having a hard time of it lately and to be honest feeling a little down. Ask any of my friends or family and they will say I am a social, confident, happy, optimistic and fun person. So this feeling down period didn’t sit right, I didn’t want to share it as it could knock my pride too and I thought it is counter-productive for showing the positivity of disability.
I hadn’t shared it because of these concerns. However having had some good time with my best mate Billy and a much needed night out to get my mojo back, I feel I can share it after all. The bit with it not sitting right and impacting on my pride is silly. I realise that now. Also, regarding the impact on me being down adding to stereotypes of “all disabled people MUST get down lots” is silly too. I have been down partly due to disability and partly due to this thing called life. If I was to portray myself or indeed all disabled people as always happy, it just wouldn’t be true. I think by sharing my recent low time, it shows disabled people it is ok to feel down whether linked to disability or not, as it is normal and actually healthy. Also it shows non-disabled people that disabled people get down too, but simply because its part of being human. Sometimes the additional considerations can get harder, however this isn’t about needing sympathy, just a realisation of the extra considerations.
I have tried to break things into boxes to assist myself in why I have felt down and this is my basic conclusion. I don’t think I have withheld anything but if I have I am sure you wont mind me keeping a little bit for myself in any case. Basically I was thinking with summer here, the new job going great guns, the blog and sunnier days event receiving good responses (http://www.martynsibley.com/a-sunny-start) and having such wonderful family and friends in my life, why i am getting down? I then thought harder and this came to light –
Since I received my new car in August it has broken down all too many times. It went away on Tuesday again. I didn’t event tweet or blog because it just gets me too wound up now. Luckily ‘access to work’ are funding cabs to work so my stresses for getting to the office are slightly relieved. Without the car it did mean my trip to stratford-upon-avon was less possible as i would need to pay for my train, my PA’s train and the hotel for both. Bit too pricey, so had to rearrange. Also any spontaneous trips generally are out the question. Car returns Tuesday from my understanding, so fingers crossed. As soon as it does I plan to visit Toby.
Onto Toby and this box of my life. Toby fell ill before I went Mexico. It has been a rollercoaster ride with a chest infection, his organs stopping and having some fits. He has slowly been improving the past 2 weeks but has a long recovery period to undertake. I did try and visit couple weeks ago but he was asleep. Not having the car has made it hard to go recently and before life was just crazy with the new job and the sunnier days event. Furthermore i had bad health through the winter as you’ll remember reading. From October to January I had 3 colds which turned into chest infections, time off work and was stressed about where this was heading. Since i have been apprehensive to drink alcohol much, be out late or generally go wild. Very sensible but hard to think even one night out will send me down again, with the need for more antibiotics. With this period i have been very concerned my SMA has worsened, been feeling a bit weaker in my body generally and fretful of Toby and myself with the baby-milk syndrome (SMA is also a brand of baby-milk, bit of an in joke, to lighten the mood at this stage 😉 ).
As mentioned care wise i worry a lot about keeping my PA’s happy. This has been a funny one to work out as its a balance of doing the things i want do with their assistance, but knowing if they are shattered and struggling themselves. I guess for me becoming more independent is key as then i do not need someone with me all day. However with needing assistance with food, drinks, toilet, opening doors its a luxury i do not always have. I now know I cannot always ensure my PA’s happiness but I know in my heart I do try and I am sure they do know that too. Furthermore the responsibility of direct payments (the function to employ your own PA’s) is a tough responsibility. I have to create rota’s, pay their wages, pay the Inland Revenue employment taxes, fill out monitoring forms showing where the money was spent and have reviews on my personal finances and general well being. This is all understandable and fine, but when working full time is hard to fit in and manage. I am lucky my parents assist but it can feel a big pressure at times.
Socially I have a good time. However i have felt the need for something different. I fancy something that will help my SMA with exercise, something a bit new, something with new people and something cool. While i enjoy cinema, pubs and concerts the need for this has been playing on my mind too.
So having depressed you all with the aspects i have found hard, here is the happy, uplifting part. I have had to understand my limitations. Sometimes working full time is enough. Everyone still needs a healthy social life and time with their friends, but when work shatters me i have to listen to my body. I think with the warmer weather i am actually no weaker, its just when I am stressed and tired (more so in cold winter too) I do find moving harder. I also have realised to acknowledge the stresses of running a care team and hassles of transport. Without tube access, busy buses and of course a broken car – travel is hard in a wheelchair. By understanding if either these 2 ‘boxes’ are broken, they are my foundations to the rest of life and will of course make other parts of life feel wobbly.
I have recently found a local swimming pool which has hoists and changing beds. By going swimming once a week i will have a new outlet for exercise, meeting new people and something different. Since i have thought through some of these issues i also managed a late boozy night out on Friday in Camden. I was up late and knocked a few drinks back but feel amazing. I love socially interacting with people and going to new places. The thought of this getting harder is rubbish. Friday showed that it doesn’t need to make me ill and it does actually make me feel great, providing i can sleep and relax afterwards, before the working week begins again.
So, i am trying to views this as an unfortunate time. If only one of the above happened, or all of them but for a minimal time, this blog wouldn’t have been necessary. As there have been lots of things impacting on me and over a long period of time it understandably has effected me. The key is i have told my friends, told my family, done the things to make a positive change and tried to keep going. With the clarity of why I have struggled at times, cutting myself slack to not feel I have to achieve so much too soon, and basically chilling the heck out I am feeling good. I believe this is a normal situation we all go through. A kind of what doesn’t kill you makes you stronger.
Am interested to hear what you think here. Not so much of my personal particulars but more so how people can feel down at times, how they cope and enable themselves to improve/become a better person for it? Also if you’re not disabled do you have any thoughts on this post too?