Dear world,
First of all I wanted to say a big thank you to everyone who
has read my first blog and for all your comments...I have to say I was very
overwhelmed by the responses I got. A mixture from people who knew my story, through to people I’ve not seen or heard from in years. Everyone has been so
positive and I’m sorry to the people who I made cry, it definitely wasn’t my
intention! I guess I’ve had 20 months to come
to terms with it, whereas I suppose in less than 5 minutes of reading my blog
there was A LOT of information for you to take in.
I have to say I’m feeling a bit of pressure about this blog;
hopefully it will live up to my first one!! If not I’ll have to stick with the
day job. I’ve been thinking long and hard about what topic to do for this one,
and I feel like I have loads to share but I’m conscious I don’t want to sound
like a girl on her soap box. So like I did with the first one I’ll just go with
what my gut tells me, after all I am a girl who wears her heart very much on
her sleeve. So here goes………..
If I had a £1 for every time I heard “you don’t look ill” (well
I would definitely be able to afford more than a 2 up 2 down house in Cheshire
I can tell you). I think this is one of the most frustrating things of having
PH; well apart from actually trying to live “normally” day to day. I’ve learnt since the diagnosis, people have this misconstrued opinion that in order for you to be ill, you must look ill, ie. be grey, gaunt, miserable, be in a wheelchair or walk with some kind of limp. On the outside I look like any “normal” 31 year old girl, bar possibly a few more wrinkles than others. But on the inside I can tell you it’s a very different story. On a daily basis the condition causes my feet to swell so much so that they look like elephant
feet, or sometimes they just get so red and ridiculously hot that it looks like I’ve just been sunbathing, wrapped my whole body in a beach towel except for my feet and burnt them! Often I get to the top of the stairs and am so out of breath my heart will be racing so
fast it actually feels like it's about to jump out of my body.
I’ve always been an independent woman, I travelled on my own
for 4 months around New Zealand, Fiji and the States; I have lived on my own, dependent to no one, but now I am traumatised of a blue square card. A few
months into being diagnosed with PH I was granted a disability badge. Something
which even now 16 months on haunts me, and whilst I write this I can feel my
heart race that bit quicker. Why you may ask? Well we live in a society where
we are judged. We’ve all read the Daily Mail online at lunchtime eating our
sandwiches, where the headline is “another fraudster playing the system: has a
blue badge but is caught on camera being able to walk”. We all tut and think
what a sponger, we all pay our taxes (well maybe not all) how can they get away
with it?? I hold my hands up, I used to think exactly this way. You may laugh, but
I still now when on the rare (even rarer than me having PH, which is quite
rare, as I would have more of a chance of winning the jackpot of the euro
millions than being diagnosed with PH) chance I actually use my blue badge, I
glance around to check there isn't a Sherlock Holmes look-a-like hiding in the
shadows ready with their camera to catch me out, so that tomorrow so I’ll be the one
plastered on the Daily Mail website!
Seriously though, Andy gets so frustrated by me not using
the blue badge. It’s meant to help ease my life but instead I’ll end up parking
in the furthest away space just so I don’t get judged or looked at differently.
I try to convince myself I’m not that ill, that I can walk that extra 100m even
though I know in my heart of hearts I probably am over doing it, but I’d rather
try and deal with the pain I cause myself rather than having someone else’s
eyes judge me which lasts for far longer.
We went to Chester Races a few weeks ago (which I may add,
the day after was the day I wrote my first blog). I had been looking forward to
it for ages, bought myself a new dress (there is a funny story to tell about
this episode which if I don’t ramble on too much now I might be able to add in
at the end) did my hair all pretty and spent hours in the mirror trying to
cover up my ridiculously red face, which unfortunately is one of the side
effects of one of the drugs I am on. Wherever possible I try to forget I have
PH, I want to be Gemma the girl who used to be a party animal, the one that would
always be the last one standing, who would always demand a dance off with any
girl or boy who tried to challenge me, always up for a laugh and the impulsive one
who got so drunk she thought it would be a great idea at 2am to book a flight
to Canada for the following morning, to go and sit in a boat watching barefoot
waterskiers for a week. True story. And in case you were wondering I did make
the flight at 7am hungover and feeling extremely sorry for myself.
So we arrived at Chester Races and I realised quite quickly I
was going to be in trouble, we were in the posh bit apparently but it was all
standing, no seats. Going back to an earlier comment, my feet when standing for
any longer than say 5 minutes get so swollen and become incredibly painful.
After a lot of walking back and forth from the bar to the betting stations my
body just started to give up. Which when you are surrounded by 50,000 people it’s
not the best situation to be in. Luckily for me I have the best boyfriend in
the world who can read my thoughts and he went on the hunt to get me a seat. So
we ended up in the disabled bit. Well you can imagine my thoughts, “girl at
races, in heels walking, takes up seat in the disabled area”. Definitely, I was going to be in the Daily
Mail on Sunday morning. I got a few stares from the security people who
were blocking the entrance to the disabled areas as though it was the VIP
place. I managed to ignore the stares for a bit and got back to having fun at
the races and cheering on my one horse that won . Then this guy who clearly
hadn’t seen the big wheelchair sign tried to come in and grab a seat. The lady
in charge very kindly informed him that the area was only for
disabled people. He looked at me and that look of pain came
stabbing in my heart as he shouted to anyone who would listen “well what about
those 4 over there, they aren’t disabled, they are clearly playing the game.”
All I wanted was the ground to swallow me up, the looks we got as though we
were frauds. I wished for that second I had an illness that was known that you
could say I have this or I have that and then people understand, but alas, PH isn’t
well known or heard of so people don’t understand how simple living can cause
great pain. From then on I couldn’t fight off the demons in my head, “you aren’t
normal, you can’t do normal task anymore”. Unfortunately it ruined the rest of
the day for me and I’ll admit I did have a weep on the train back thinking if
only people could understand for one second what we with PH have to live with.
When I was newly diagnosed I met a lovely girl Sarah, and it
became apparent quite quickly we have very similar interests and dreams for the
future and also were the same age, so we had a close connection. Sarah has been
a great support to me and a great confidant when this disease makes you hit
rock bottom. She has a different type of PH to me, as there are quite a few
different versions of PH, all still the same incurable disease but hers is
secondary which means hers was developed due to another condition she has,
whereas mine is primary which basically means it has formed on its own. You may
remember from my last blog, mine is called Idiopathic which in a nutshell
basically means they have absolutely no idea why I have it! Helpful when you
are trying to come to terms why I am one of the 3,000 people with the
condition! Not!
So I went to see Sarah a few months ago when unfortunately
she was back in hospital due to her lung collapsing and she was asking how I was
coping with PH and I mentioned how tired I get from doing normal chores etc.
She suggested that I start using my wheelchair more. Now as we have learnt
already I am traumatised by having a blue badge so you can guess I am even more
traumatised by being in a wheelchair. I feel like it defines me and again the
whole judgment by other people seeing me differently than if I was standing up.
Now a funny story (I mean we haven’t had a laugh for a bit
yet have we?!) we drove to the Trafford Centre and tried to find a disabled
space, well they were all full! There was a space next to them that wasn’t a
disabled spot and Andy said “just go into that one”. I instantly snapped at him
and said “if I’m going in my wheelchair I am going to use a disabled spot”. So
we spent about half an hour driving round the Trafford Centre to find a space!
Total waste of our time granted but it was the principal of the matter, I had
to have one perk to actually using my wheelchair.
Anyway I digress. So we had come to find a dress for the
races. So off we go Andy pushing me, I think he likes pushing me as most people
who know me know I am the bossy one out of the two of us. Normally I’m dragging
him into lots of shops, this time though he got to ignore my pleas of going
where I wanted to and he just ignored me and took me where he wanted to go! So in
the end we arrive in John Lewis and one thing these shops aren’t designed for is
to have a wheelchair go around the racks. I think we may have run over a few
clothes that were on the floor and at one point I thought I might drag a whole
rack with me as one of the hooks got caught on the chair! In the end I got so
frustrated with saying to Andy “slow down” or “go back to that rack” or “turn
left” or “turn right” I got out of my wheelchair and started to walk around.
Well the looks I got from people. Quickly I shouted out “it’s a miracle, I can
walk!” Andy and I had a good giggle to ourselves and it was probably the first
time I actually didn’t care what people thought of me for being “disabled”.
Gem xx
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