Due to the support I have received I will assume that my regular viewers are all aware that I am currently fundraising for a Power Assist Add On for my wheelchair. The Alber E-Fix 35 (You can find out more about this piece of equipment here).
I thought I should take some time to explain why raising the money for this amazing piece of equipment means so much to me. This also relates to some of the points I talked about in my last blog post, ‘Let’s Talk – Cauliflower & Being Independent whilst Disabled’.
I have always been… rather… strong minded? stubborn? I feel I’m not coming across very well right now but honestly, I’m lovely…
In short this means I have always liked to be as independent as possible. However, when chronically ill and living with disability this can be quite difficult. I do rely quite heavily on James for certain things and he is amazing but he can’t be available every second of everyday and I don’t want him to be. I would like to be able to do certain things for myself.
In my current circumstances though I am unable to do these things. As well as generic day to day things that most people take for granted. I cannot currently sustained pushing myself in my wheelchair due to my hypermobile and frequently dislocating joints. This means that the majority of the time during the days I am housebound.
Having power assist would mean that I am able to go out to do things that I am currently unable to do. Although when I have spoken to a lot of people about this many do not understand why I want to be able to do things independently and why I don’t just ask for help.
I do ask for help but as I said I am very stubborn so, if there is a way for me to make it work, I make it work. I also shouldn’t have to rely on other people if there are things out there to allow me to be independent. Personally I don’t think I am asking too much. Why can’t I be independent just because I am disabled?
Currently I struggle to take myself to my Hospital appointments and frequently don’t get to see a GP when I need to because I cannot take myself. Yes, my family offer me support however, if I decide one evening or one morning that I need a GP appointment there and then the chances are that there isn’t going to be anyone around to help me.
This quite often leaves me with a lot of “unnecessary stress” I say it like this because yes there is reason for me to be stressed if I cannot get to my necessary appointments. However, if I was able to take myself I wouldn’t have this stress.
It also means I am unable to pick up medications from the pharmacy and believe me my life would be so much easier if I could! Question, does anyone find there pharmacy easy to work with? Mine used to be great, now-a-days it’s never ready when it’s supposed to be etc which means if I arrange for someone else to collect my prescriptions, it is ALWAYS a huge faff. James often does this for me but sometimes he’s away for work so I have to find an alternative solution.
One of the things I miss the most and I think I will take the most pleasure from when I finally have power assist would be just going outside. I have always been an extrovert, I love being outside, I love being busy as much as possible (when my body allows it). Being stuck inside all the time absolutely sucks! Having the E-Fix will allow me to go out whenever I like. If I fancy some fresh air, I want to clear my head, whatever it may I would be able to go out and breathe in the fresh air.
Another thing that I would love to be able to do is pop to the shop if I need to. A few people have said to me that if I need help with my shopping to ask. However, they are misunderstanding what I am saying. I don’t need help with my weekly shops James and I do this together or where need to I order online. What I am talking about is the thing you do when you run out milk, when a friend comes over last minute and you want cake or perhaps wine! It’s going to the shop because you fancy something nice for lunch. Usually in my case it’s wanting to pop to boots because there’s a lipstick, mascara or face mask that I “need”. Either way my point? I should be able to pop out just like everyone else, those unplanned spontaneous trips. When Chronically Ill it is hard to live a spontaneous life but this is something I feel I should be able to do, with the help of Power Assist.
The thing I would like the most though? To be me again, to be Holly. Since becoming almost entirely wheelchair bound I have found I am treated very differently. These differences may seem small but to me they have a big impact and make me feel differently about myself.
Once upon a time friends and family would call or message me asking if I want to go out, for lunch, for coffee whatever it may be. However, now they call or message to tell me they’re coming to take me out. Now this difference as I said may seem very small to most but it means a lot to me.
I understand that these words are used with the best of intentions. However, it makes me feel very small and incapable. I know that they want to see me and spend time with me (at least I hope so – awkward) but it sounds as though they are coming to take me out because they know I can’t do this independently. I feel as though I am a thing that everyone thinks needs taking care of, that they feel sorry for me. Don’t get me wrong my life is hard and I am sure there are many people in this world who couldn’t manage the last ten minutes in my shoes let alone the last ten years. However, this is my life. I have somewhat accepted that, that this is how things are and I don’t want your sympathy. A little bit more empathy wouldn’t go amiss sometimes but I don’t want sympathy. Just a little understanding of my needs i.e. the way I live, the way I am and my accessibility needs.
This means that being able to go out, to do things, to make plans knowing I can do this independently will make a HUGE difference to my life. People will ask if I want to meet rather than treating me like a fragile subject that needs watering from time to time. I also find myself always agreeing to go out because people offer, I find myself perhaps staying out too long or just going along with what someone thinks I need or want. This is mainly because I struggle to politely say no. I struggle to explain that I don’t need someone to do my shopping or take me out for it. I would just like to go out as and when I need to for milk, fruit or perhaps some cake!
The Alber E-Fix will give me back certain aspects of my life. Aspects that I started to believe I wouldn’t have again. It gives me options. Most of all… I’ll have a little bit more Holly back. Granted still in pain and fatigued but I will independent, stubborn and a slightly happier Holly again.
I am grateful to all my friends and family but there are some things that you need and want to be able to do for yourself and this is some of what makes me Holly.
If you would like to donate to my Power Assist fund I would be forever grateful. As of 10th February 2018 we are £850.00 away, with roughly 3 weeks until my order arrives I am eager to raise the rest of the funds. If you could share my story and my Go Fund Me page I would also be extremely grateful, everything helps.
Thank you to everyone who has supported me so far, although I wish I didn’t have to do this it has been incredible and I have been blown away by everyone’s kindness and generosity.