Wednesday, 28 September 2016

An Honest Chat About A Rubbish Appointment

When bad things happen for the past nearly 5 years I've always come to my blog to vent and get all my feelings out, it might not be the right coping technique for everyone but it works for me. This often means sharing some quite heavy and personal things but I've always felt comfortable sharing things here, I'm never quite as honest as I am to friends and family though but today I really feel like I just to need to be angry and moan and be as honest as I can be. I don't know what to do, what to say, who to talk to so I'm just going to type and keep typing until I don't feel as crap anymore. Sorry this is going to be a negative post.

Photo credit: Makeup Savvy

Last month I found out more information about the tarlov cyst that is sitting at the bottom of my spine, sitting on nerves causing me intense and severe pain all the time and slowing eroding away my sacrum. I didn't see my actual surgeon at the time so the doctor I saw went away and my case was added to the MDT meeting, a meeting where all kinds of doctors come together to discuss tough cases. Today I had a follow up appointment regarding my hip replacement and the doctor who happened to be doing it was that same doctor that saw me last month so I was able to find out the outcome of the meeting. Today also happened to be the first time that I cried during a hospital appointment.

Last month we were informed that potential surgery to remove the cyst would be risky but we weren't able to get too much information. Today it was confirmed, the risks of things like paralysis and incontinence were too high to proceed with any surgery. I asked to be referred to a surgeon I know of at Stanmore who is highly regarded in treating these cysts and it turns out his team had been part of that meeting and they had agreed that surgery was too risky. However, without surgery I risk fracturing my sacrum, nerve damage, increasing pain, numbness, bladder issues, the list goes on. Not to mention the fact that this pain means I can only walk a few steps around my house and even when I use my powerchair outside I am not able to sit up in it for long. When I got my powerchair we had no idea about these problems and whilst it gets me from A to B and I'm so grateful to have it, it just isn't perfect for me and adapted for my problems. And now these people are telling me that there is nothing they can do and so this is basically for life.

Long term I have no idea what this means, my oral morphine is already starting to have less effect so what happens when that stops working completely? I have already exhausted most pain relief options and the BuTrans pain patches I'm trying now aren't making any significant dent in my pain. I feel so abandoned. I've never come across someone with Marfan who like myself has had such a wide range of problems, I hate saying 'why me?' but I can't help but think it. It isn't just this cyst I have to deal with, I also need major heart surgery within a matter of years to replace my aortic root before it becomes a life threatening problem. I still need my left hip replaced but now that has become a much riskier procedure, the risk of my sacrum or hip socket fracturing is now high and the operation might have to be done a different way rather than the normal way my right hip was done. I still have pain throughout the rest of my body, dislocating and subluxating joints. Migraines. Fatigue. The leftover pain and stiffness from having spinal fusion. The list of problems feels never ending and I'm not sure how to cope with it all if I'm honest.

I'm terrified about the future, a future full of pain, a life spent laying down. I'm trying to stay positive, I really am, but when it's just bad news after bad news I'm not sure how to anymore. I don't write this for sympathy for attention, I write this because I need to do it for myself. I don't want my blog to become a place of sadness or pain but I just really needed to vent so I hope you can understand why I had to write this, normal posts will be back very soon. Thank you for all your support, it means a lot.

Tuesday, 13 September 2016

It's Time To Have A Catch Up

I'm typing up this post in bed, the first time that I have done so as for the past few years I've stayed stubborn and sat at my desk to blog even when my pain almost brought me to tears. Recently though sitting completely upright, like at a desk, has been near impossible. On a good day I can maybe manage it for 10 minutes and then I'll need about a 15 minute lay down to try and recover before starting again and with that routine I'm just not getting anything done.

Photo credit: Makeup Savvy

Blogging is the only thing that I've managed to keep doing throughout all my health problems so when my body started preventing me from doing that over the past 6 months I did start to become very frustrated. I'm not really sure what the point of this post is but I felt like I really just need to vent a few feelings about blogging and why things have been quiet. On my good days I have to pick between blogging and leaving the house as doing both simply isn't possible and ever since I got my powerchair it's been a no brainer for me, leaving the house will always take priority. But blogging is the thing that keeps me going, it gives me something to do so not being able to do it as much as I used to has been destroying me emotionally. Believe me when I say there is only so much TV you can watch during the day.

To help I am looking into a few different over bed tables (like the hospital tables) right now to enable me to blog in bed comfortably, it's something I've always found difficult as I can't sit up in bed due to my spinal fusion so I have to lay completely flat. I've found a few options on Amazon though so hopefully things will become easier soon and I do really hope so because I'm missed blogging so much. I've got so many edited photos ready to go, about 20 different posts I could type up, if only my body would let me.

When I have been able to post recently I've been making sure that I'm using my energy to talk about things that really matter to me. My post about accessibility and getting my local LUSH store to buy a ramp was one of my favourite posts to write and the reaction I got from everyone when it went live was amazing, I think it's the most popular lifestyle post I've published this year. I want to blog about disability a lot more, it makes no sense for me to stay quiet on a topic that is such a huge part of my life and I've become so passionate recently about trying to change things for the better for disabled people in my own small ways. I think ever since I talked to LUSH and managed to get them to a buy a ramp, thus letting a whole new group of people access their store, it's really encouraged me to get more involved with issues like accessibility. The Paralympics is on right now and I've already got a post lined up about it, the good and the bad parts. I don't know about you though but I'm really loving it and have it on all throughout the day in the background, Team GB are smashing it.

As I said before I'm not really sure what the point of this post is, I just wanted to write something chatty like I used at the very start. Reminds me, I've nearly been blogging for 5 years, that's a bit cool. Sure I will write a post about it and my 'blogging journey' when the date comes around, for now though I think I've rambled enough!

Friday, 26 August 2016

Let's Talk About Accessbility

Today I want to tell you all about a super positive experience I had recently regarding accessibility. Ever since I started using a wheelchair more and especially since I become independent and got my powerchair I've totally had my eyes opened to how inaccessible the world can be for disabled people. We all have different access needs and using a wheelchair means that even one step into a shop, for example, can look like a mountain to me and others. In my local town centre the access is generally good but there is a small shopping centre with some shops that are basically a no go zone for me. Last year I finally decided I'd had enough though and I contacted the worst big chain shop access wise, Topshop.

My local Topshop is made up of 3 floors and I'd always known that there were escalators to get up to the first floor, steps back down and then steps down to the lower floor, I also just assumed there was a lift to all floors. I don't shop in Topshop all that often so when me and my Mum went in there, with her pushing my wheelchair, we were pretty disgusted to find that there actually wasn't a lift. The Equality Act states that shops have a duty to make reasonable adjustments and I was sure that putting in a lift was reasonable for a big brand like Topshop to do. Apparently I was wrong. I emailed Topshop and after a few exchanges I stopped replying after they basically said that the process of putting in a lift would be too inconvenient for other customers. Always lovely to hear that a company values it's able bodied customers over it's disabled customers, I was under the impression we were all equal.

So, when another shop caught my eye in terms of lack of access I was hesitant and nervous about contacting them. I had no need to be though because what followed was the most positive interaction with a company that I'd ever had. I hadn't fully noticed the access problems with my local LUSH store until I got my powerchair, the step to get into the shop is small enough that my Mum could always get my wheelchair and me up and over the step with ease but in a powerchair this isn't possible. LUSH is a shop that I do really love going into so I put my nerves to the side and sent them a tweet. The conversation that followed couldn't have been better. I understand that the shop legally should be accessible already but when this isn't the case so often it is nice to celebrate when shops own up to the problem and quickly sort it out.

The manager of the St Albans store was very open and honest with me and explained that the accessibility issue wasn't something that they had been aware of until I'd said something. Often if you don't personally know anyone who is disabled then you won't have any idea what some of our access needs are and something like a small step being a barrier isn't a thought that comes to mind so I'm glad I spoke up and told them. They apologised and said that they had ordered a ramp that should be with them soon, I honestly couldn't believe that they had reacted so positively and also that they wanted to correct things so quickly. The ramp was in store within a couple of weeks and at the start of August I went to try it out and everything went perfectly. The ramp managed to take the weight of my powerchair easily and it will enable so many people to access the shop! You have to ask for the ramp if you require it, which is no problem, except for the fact that in theory I was the only one who knew about it as there wasn't a sign to let people know that it was available. I emailed them to suggest putting a sign up and they impressed me again by saying that they had already requested for one to be made!

As I said before I realise that shops like LUSH are legally required to be accessible already but when so many shops and public places still often aren't I think we should definitely praise places that put their hands up, apologise and quickly put things in places to improve their accessibility (especially when big brands like Topshop don't seem to care). A huge thanks to the team at the LUSH St Albans store for being so friendly and wonderful, I'll have no worries about going in store again.
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