Sunday, 16 August 2015

Life is a rollercoaster

Dear world,
My new title for this blog is not about me confessing to being a secret Ronan Keating fan. In fact I don’t know if I can stand any other pop star less, just seeing his white pearly teeth give that cheesy Irish smile is enough for my skin to crawl. So you’ll be pleased to know this blog isn’t about the boyband idol himself, instead it describes the last few weeks of my life.
As you may remember from my first blog, I work in recruitment and whilst it definitely wasn’t my dream job aged 4, when I was aspiring to be a ballerina, I still love the job. Anyway I’ve done it 8 years and I actually do feel like I have my dream job (well sometimes). It’s definitely the champagne and razorblades world we all describe when in recruitment, but even the lows (which have been plentiful, after all I started just before the recession), have kept me going. Recruitment has definitely taught me a few things: resilience, persistence and to be thick skinned. All of these qualities, (as I like to see them) have probably supported me when first being diagnosed with PH. So far I feel they have held me in good stead. Well that was until a few weeks ago.
To be told by your consultant that one day the tablets will stop working, you know that at some point your body will give in, but you don’t know when, so the tiniest signs of not feeling “normal” you start to panic. It’s happened a few times where I get that bit more breathless or have less energy and everything becomes much more of an effort. Luckily each time there has been a reason, I’ve overdone it or picked up a virus/infection or even the weather (and I’m not being a typical British moaning about the weather here, it may sound unusual but it can genuinely really affect PH sufferers in both warm and cold weather, and unfortunately neither are particularly helpful to our condition). Now granted when I was younger I probably was described as a hypochondriac, but being slightly older and maybe a little wiser I’m learning when my body is trying to tell me something. And the last few weeks my body has well and truly told me to take a break.
I had noticed a few weeks ago that I was truly exhausted; this was a new level of tiredness. In fact I can’t even call it tiredness it was extreme fatigue. Someone described me as looking “dead behind the eyes” which isn’t the nicest of compliments to hear I can tell you, but it probably explained what they saw. I literally couldn’t function, everything was a chore, even reading was difficult. I’d re-read words over and over again. Now as we know I am a believer of fate and I did keep thinking well at least it’s happening at the right time as I have my 6 monthly review at Royal Hallamshire Hospital coming up so I’m sure they will sort me out and tell me not to worry. It’s more than likely the weird weather we are having which is throwing me off kilter.
6th August arrived and I had a bad morning in bed looking ghostly white according to Andy (again the lovely compliments just keep coming, good job I’m not one for vanity) and I had barely any energy to claw back the duvet. But I knew I must, and in a weird way it was a comfort to know I was going back to the consultants who know me and understand the condition inside out. I let Andy drive (which showed how ill I was, as I’m the control freak in our relationship and I’ll admit I am a typical back seat driver) and we set off across the Pennines and Derbyshire countryside, along Snake Pass. Thankfully it was foggy and I wasn’t faced with one of my greatest phobias… Electricity Pylons. Lattice style Electricity Pylons to be precise, which is ironic considering I grew up in a house that had a pylon at the bottom of the field on our street. But me and her are still on good terms. We respected each other’s boundaries, she didn’t move into my space and I didn’t go into hers. Note that I am talking about a pylon being female, for anyone who wants a more detailed version please contact me and I will happily share my view point on female and male pylons. Also for good measure she was named Audrey.
Anyway I digress, we arrived at the Hallamshire and I had the standard tests which I am well versed at. I had an ECG, a walking incremental shuttle test (like a bleep test) and blood tests. I then waited to see the consultant. I knew I had walked the longest walking test I had ever done since going, which was 380m, the highest before then on average was 250m. Now anyone just looking at those figures would think great she’s doing really well, she’s improved quite considerably. But what the figures don’t tell you is that I had pushed myself so hard to the 380m that I almost collapsed. For the next few hours my heart was racing so fast and my breathlessness was insane. I knew I had way over done it. But I am a stubborn woman who is trying not to let this illness defeat me.       
After a short wait I saw one of the consultants (there are 4 in total) and if I could spell his name I would but it’s Greek and it’s a long one at that. We went through the standard format of the appointment; how have I been, any differences I have seen, how I am coping day to day etc. It starts off fairly positive so I think well maybe all my negative thoughts are just my mind worrying unnecessarily. We even manage a few laughs here and there, one finally being after 18 months of being on warfarin (which is also known probably more commonly as rat poison) they have agreed to change it for the new drug, rivaroxaban. I “jumped” for joy to know that I wasn’t going to have to go for my weekly blood tests anymore, I could eat as much green vegetables as I like, and I could finally have a few alcoholic drinks without worrying that the anticoagulant ladies wouldn’t tell me off if I slightly overdid it on my 2 units allowance of alcohol per day! So the consultation is going well, even my conscience is willing the consultant to say “we don’t need to see you for the next 12 months”.
Wishful thinking on my part.
I should have known it was too good to be true. The consultant then started to go down the path of the future, which is something they haven’t been keen to discuss with me up till now. Whenever I have asked previously it’s been very vague and I have been almost fobbed off with “we don’t know what the future holds”. I’ve always pushed them for more of a definitive answer however I’ve always ended up with fruitless results. This time however I didn’t need to, he wanted to remind me I have a progressive disease and remind me again “one day the drugs will stop working”. Then it came…….”firstly we want to see you at the end of this year to change your medication”. WHAT?? WHY?? SO I AM GETTING WORSE?? My conscience is in her element. The consultant picks up my thoughts and carries on to say, “Well Gemma whilst you are relatively stable, you have a progressive disease so we need to stay well ahead as we can so we will look to put you on iloprost”. I was first put on this drug when I got diagnosed and it can be administered in two ways; either I will have to sit and inhale it three times a day for 30 minutes each time or I’ll have it intravenously injected straight into my chest which will be there 24/7. Both mean a lot of change to my current medication regime, but I am hoping for the inhaling one rather than constantly having a needle inserted in my chest.
Ok so new medication regime might not mean a lot to anyone who doesn’t take powerful medication but the side effects of these powerful drugs can be horrendous. When I was put on sildenafil (the more commonly associated name….Viagra, yes I am on Viagra 3 times a day, you can start the innuendos now!!) my face went a deep shade of purple and within 15 minutes of taking the drug I went blind for about half an hour before passing out, which I think was the most scary situation I have ever been in. In addition I got and still have to this day the most horrendous headaches. It took my body months to get used to these drugs and the side effects they all bring. So now they want to change all that. Not ideal when I work full time in a stressful job that demands long hours. Being a control freak that I am I absolutely detest when I’m not in control and to know that come the end of the year I will be admitted back into hospital and given a new set of drugs to add into my current regime I have to say fills me with dread.
Secondly and definitely even scarier than changing my medication we discussed a topic that whilst I always knew was lurking somewhere in the dark in my future, I have to admit I never thought we would really talk about, or at least not now, less than 2 years after being diagnosed. The one phrase that I can honestly say I wasn’t anywhere near ready to hear was “I am going to refer you to Wythenshawe and ask that they assess you for a lung transplant”. (Silence for a good few minutes at this point on my part, even the conscience was silent). I just kept staring at him, willing myself not to cry, as I didn’t want to ruin the good fun “party” we had had moments before and all I could think was that I must have misheard him say that as surely this cannot be happening?? I mean I thought he had said I was relatively stable?? If someone is stable how can they be even discussing transplant??? Clearly the consultant read my signals and interpreted that as Gemma wants to know exactly what that will involve. So over the course of the next few moments, I had an out of body experience where I was floating above us all as he described the next steps.
Both me and Andy walked out of the room not sure whether to be pleased that I was relatively stable or whether to be upset that actually my disease is starting to get worse and therefore we were needing to take the next steps.
It hit me………24 hours later.
I had been out for a client lunch being the life and soul of the group as usual (well we’ve heard other peoples comments before with a far less positive spin on it so I think its about time I injected some positivity into this blog). The lunch was lovely, I say my good byes to them and off I head back to Manchester. I can’t really remember what set me off, it may well have been the depressing sounds of Adele (don’t get me wrong I do love Adele’s voice, she can actually sing compared to the previous bloke)  but you do have to be in a certain mind-set to listen to her and clearly I was an emotional wreck that day. I think I cried the entire hour home down the M62. I remember driving up to some traffic lights taking my sunglasses off and turning my head to the side and this guy in a white van clearly saw me sobbing my heart out, he wound his window down to say “are you alright love” to which I tried to nod back and gave a slight smile to appreciate his kindness. I think I cried pretty much all weekend. Lots of different thoughts, of which I won’t share with you, as I appreciate it’s a Sunday night and most people have the Sunday night blues at the best of times, but the moral of the story was me feeling quite sorry for myself.
This week just gone, was probably one of my lowest. Whilst I am still tired and my breathlessness is still there in the wings, I have rested as much as I can so that I can try and fight this journey that little bit more. After all, I think we are only just at the beginning of a very long and unknown journey. And as they say what doesn’t kill you makes you stronger!
Gem xx    

Sunday, 2 August 2015

Looks can be deceiving

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