My Goal for Independence.

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.

This is my new favourite at home jumper as it keeps me warm and cosy. I honestly love it a big thanks to my Aunt!

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.

A collection of photos from the last two years. All of which have been taken whilst outside in the middle of nowhere or by the water. I can honestly say that these moments are some of my happiest!

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.

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.

One thought on “My Goal for Independence.

  1. An honest and simple request I think. Until someone walks in your shoes they will never truly understand all of the impacts having chronic illness brings. Loosing your independence is like someone breaking off a small, but key part of your soul. It’s like the light that shines within you has been dimmed. Some of the sparkle in the eyes has gone. Independence may not be the be all and end all of what a person can lose, but don’t ever under estimate its impact. However well intentioned, much of society seem to think that in loosing your independence you also lose some years too. As I said maybe not intentionally, but help and assistance given comes with a reverting to how they might speak or aid a child, say a 9 year old. There is often an automatic assumption or reversion that when pushing someone in a manual wheelchair, that it is the same or should be treated the same as pushing a toddler in a pushchair. Where they go, you go. Where they think it’s best to stop, you stop. If you wish to look at something, they will line themselves up to see that product, not you. Your looking at something but you companion remembers something else or wish to go over there, you get spun round, dragged backwards, just moved, as though you might get lost or stolen if left alone! I one told a friend I understand now why so many toddlers & young children have tantrums in their pushchairs. It is sooo frustrating! If not we were asked!
    So to seek something to give you back your independence, even just some of it, I think is essential! Shouldn’t have to be asked for really & no one should ever think to deny it or say you don’t need to be. To us all, it’s as essential as the air we breathe. You will only realise this when you too loose yours. It gives us choice, its spark for our spirit, it’s the light that twinkles behind our eye. It’s passion, it’s growth, it nurtures our soul, it’s what drives us forward. Nobody can be there for you 24/7, everyone also has their own life, obligations & limits, so those generous offers of help, however much appreciated & often needs be accepted, can’t always be there. Each offer accepted brings more than just the help in itself, a host of other frustrations can follow & have to be navigated (see a few of these points as raised above) & with this all, each help that needs to be accepted, it’s like a small leaf starting to wither on the tree that’s your life. Because when life gets to the point when you loose all independence, I think the light of our souls becomes so dampened, it just shy of extinguished. There maybe other challenges ahead, other help still needed, but with independence comes spark, the light shines more brightly and twinkles in the eye, us, who I am, the name I answer too and all that I am, is in all of that. So independence, in this case by means of power wheels, maybe one small thing to all of you, but one giant leap & life to many of us without it. Holly, don’t ever apologise for being you or feel need to justify to others why you should be independent. It is only when we lose what we take for granted, that we recognise and appreciate what we had and have lost. I wish no one ever had to lose their independence, but trust me, if you did, I can guarantee you would want it back.

    Liked by 1 person

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