Wednesday, 5 August 2015

All the emotions: Facing reality on holiday

 In my post about my trip to Brussels, read here, I said that it had re-awakened that wanderlust part of me and that I was excited to try new places. This also coincided with us not being able to go to our usual holiday destination this year. And so, we decided to try a new place this year. I did my fair share of research and found a flight and hotel that seemed ideal. And so our Zante adventure began.

Copyright: Sian Wootton

Last week my instagram portrayed travel and adventure, pretty dresses and bikini weather. A picture can paint a thousand words but sometimes not show the reality. Many people who have social media accounts as well as a chronic illness will relate with the statement that their posts are a highlight reel, predominantly sharing the good moments, just a tiny glimpse into our day, not the 99.9% unphotographable reality; and this is certainly the way in which I feel about how I documented by holiday. In all honesty I found it hard at times to face up to the realities that being on holiday as a chronically ill person in a wheelchair presented. Especially being in a wholly new place, where we knew no one. Sadly as much as I want it to M.E doesn't get stopped at border control, it is always going to be your travel companion. Of course I knew this, I wasn't expecting miracles. However when you go somewhere new when you're chronically ill or have a disability it's as though you are seeing it through blinkers, you can only see and do so much and there is so much you will miss. Sometimes it's as though you could be anywhere, just with much better weather.

I was actually quite suprised by how down I felt at times, even full on ugly crying. No this is not a recurrence of my depression! I just needed to let out my feelings and then eat them with ice cream. Being chronically ill is tough physically and emotionally and you can't always be positive about it even though you try your very best to be and others may be amazed at how you cope. But sometimes you don't want to hear "you cope with this so well" "you're so brave" "you're an inspiration". Because all I want is to be normal. Even if I can't have the life I had before. I want what is normal or mundane for most people. I want a steady job and make my own money. 9-5. Works drinks on a friday. Weekends of socialising, fun and exploring. I want to be able to make my own dinners. Do my own laundry. To be able to be able to pop to the shops when I fancy some cake or chocolate. I want relationships where I'm not going to feel like I'm a burden. Or they need to be my carer. That I feel I have much more to offer.

I just long to feel my age. To not be a burden. To be less lonely. I hate being so stuck. So helpless. So unable to even look after myself. Of not having control of my wheelchair and being pushed all over the place. Constantly worried about getting bruised toes. One seconds lack of concentration and you're into a wall. Used as a trolley. The bag minder. Made to feel you're a nuisance or in the way. Or that others are a nuisance being in the way. That you deserve so much more attention because you're in a chair. To see people pull others out the way. You never quite get to what you want to look at. You're in the way at the breakfast buffet or the salad bar. Not that you can see what's on offer in your chair. You can't go anywhere on your own. Or when you want. Not even to the loo when you're out. You can't just stand up and take yourself off. When you need to get there quick is the worst. Or rarely be able to use the stairs on your own.

I'm just so tired of so many no's. I am not a no person and I try my best not to be with this illness. I try to do what I can but still there are so many limitations. No this place is not wheelchair accessible. No you can't get along that path as someone has put signs up on the pavement. No you can't eat most of what's on the menu. No you can't go out today as you went out yesterday or the day before. No you can't just pop downstairs and get what you want. No you can't be left on your own for more than a couple of hours. No no no.

Sometimes I think I must look and sound like such a diva. Push me here. Be careful there's a wall right there. Turn that music down. I need this. I want that. This is not good enough for my needs. Especially when I need to raise my voice as both my parents are hard of hearing. I must look like a right stroppy madam. Within an hour of me being at the hotel they had already gone to buy me a chair so that I would be able to shower. Ok this is necessary and I was expecting this to be there with an accessible room and fair play to them for helping me out. But all these extra needs are frustrating. So many things literally, and I mean literally in the correct form, get on your nerves and make you feel shockingly poorly.

source: Instagram

This is not something you get used to and I don't want to get used to it. And I don't think my family are used to it either. The days when you need help just to sit up, to pull your pants up or to be fed. Even the good days where you can get out in your chair. You're not independant any longer. Others get a say. And you need them just to get through the day. You're no longer your age. Some days I don't feel like a person. I'm an illness, a disability. Sometimes people won't address me when they're speaking. A conversation will literally go over my head. Or when people talk about me it's not long before my illness will come up. Probably even within a few sentences. I'm the one in the wheelchair. Like that is my identity.  And some days I feel that even I believe that's all I am now. That I'm boring, and don't have anything interesting to talk about. Non of my former achievements seem to matter now or they are subsequent. The things I spent years and a lot of effort achieving. All gone to dust, it often seems. I hate that due to this illness I'm percieved in a way that couldn't be further from all that I have worked for and all that I am proud to be. And as time progresses and I continue to have this illness the harder it becomes to differentiate between your true self, all you want to be and how this illness forces you to be. 

But back to last week. Can I say I had a good time? I want to. I did things. Achieved a lot. More than I do in a week back here. I'm able to "say great job, you did so well." There is plenty that I will be putting in my memory jar and scrapbook. However each one was riddled with so many questions and confrontations. How arw we going to get down the kerb? How are we going to get up the kerb? Who's going to hold onto Sian while the other gets the chair up/down the kerb/step? Is there a ramp? Can you even get up the ramp? Is the ramp blocked? Where can we put the wheelchair out of the way? Look another step. Oh crap we've taken out the sweet stand. Overall I've done these things and still inside just felt blocked off but at the same time unable to shut off from constantly being reminded you're disabled. Chronically ill. Some of the things, especially the last night of the holiday I feel I did just to try escape my own head. You get like that every now and again. You hope a change of setting will let you stop thinking as much, stop crying in all honesty. I can't blame it on the place or the people. It's just been a tough week. I'm sure it might not have mattered where I was I may still have felt the same. Just utterly fed up at how cruel life has been. Lonely. Heart broken for the life that once was and person that at times seems to have been left behind. How this trip could have been if I had the health?

I don't want to sound ungrateful in anyway. I'm happy that I had the idea to go there. That I wanted to try other places. That I have great parents who care for me in every way, and without whom these opportunities just wouldn't happen. After having a really good cry and letting out my feelings by writing them down I did feel better. So I don't wish to place the blame on the place or the people at all. Nor do I wish to put anyone off going away. Because if it's something you want and feel you can do, go for it. I just wanted to talk honestly about my experience this time around. To say it wasn't all picture perfect. How can it be when you are chronically ill?

As with anything in life now I measure it through the amount of smiles I have and the consequent laughter. And while this has been a lovely trip and I have managed a fair bit, of which I am very grateful, I've not smiled as much. It's hard to admit that because you just feel guilty. Like how dare you not have a good time! But when what you can't do and all these obstacles are constantly in your face it's hard to put on a genuine smile. To keep positive. A holiday is supposed to be about having a break, and unfortunately we don't really get much of one. However there are positive things that I have taken away from this trip like my wish to travel more has been accomplished and I have done some nice things that will be documented in my scrapbook and memory jar. Even picking myself up after full on crying and being so morose, I will take that as an achievement. I did have to buy a hand bag just to be sure I excercised all my pick me up methods though.

Apologies for moaning. You know I'm generally quite positive but it can be difficult to smile all the time when everything is in your face. Thanks for listening.
Sian X


  1. Bawling! You are a person. A very special one. And you are far from boring. You're very important so please don't ever think otherwise. I can relate to so much of what you've said but always here for you. To be your shoulder. Or try make you laugh. So much love hun & well done too, you did good xx

    1. Love you! I know I can count on you to help me through any wobbly patches. We all have them. We're only human. Xxxx

  2. Good on you for your honesty! Sending lots of hugs to a brave friend

    1. Thank you Ana for always being so kind and supportive. X

  3. Sending you lots of love, happiness and positive vibes. Keep your head up beautiful.

    1. Thank you Amanda that's much appreciated :-)