Can I dare to dream big?

Possibly one of the most well-known quotes in living history I would say. I ended my last blog saying I dare to dream that I will be one of the lucky ones to see the cure of PH and that I can live a very happy, exciting and long life.  That dream hasn’t changed. I’ve just desperately been trying to make this dream turn into reality. For the most part, I have. I think everyone would agree who has seen or spoken to me in the past 6 months that they have seen an extremely happy, positive girl, more than I have been in a long time, maybe ever. I’ve dared to dream that all the fitness I am doing and how active I am being is keeping my chances of living longer than the doctors have predicted.  The past few months I have felt as strong as ever, if not the fittest I have ever felt. I have even started to dream about entering the Paralympics, as after all having a heart/lung condition, surely ticks that box? I’m not sure what sport I would want to enter yet, but you have to dream big to aspire to the next step.

Looking back at my 32, nearly 33 years of life so far, I realise there is a common theme. I have always had big dreams and the majority of the times I have succeeded in accomplishing them. What I have also learnt is that I don’t tend to do things the most straight forward way, instead taking a massive detour, but undeterred I get there, it just might take me longer than other people.

I always struggled at school academically. I started my infant years at a local Catholic school and as I always finished my work first I was chosen to deliver the milk to the other classes. When I was 7 I moved to a more academic school and went from being one of the cleverest in the class to finding the work much more challenging. I worked hard with few rewards along the way, until aged 16 an English teacher suspected I was dyslexic. After various tests and numerous assessments the suspicion was confirmed. Receiving the news refocused me in a positive way and with a lot of hard and encouragement I was able to be very successful in my exams both at school and university.

As a lot of you know I was due to move to Australia in 2013, having secured a job and sponsorship. It is 3 years ago nearly to the day that I was desperately checking my emails to see if my visa had come through. For some reason and I still don’t know why, the visa was massively delayed and what should have taken 3 weeks took nearly 4 months to come through. It was during this time when I fell ill and I was told my dream of Australia wasn’t meant to be. It may sound silly but I went through a grief cycle when I was told Australia was not an option anymore. Not only was I dealing with being told I had PH but also being told the life I had dreamed about and was just about to start was no longer a reality, I found this really hard to accept. It took me quite a while to get over, but I did and I accepted that it was unlikely I would ever make it to Australia again. During the last 2 and bit years I focused on other dreams, mainly trying to live each day and focus on the here and now. So when earlier this year the opportunity arose for me to go to Australia for a few months, as you can imagine I jumped at the chance.

Living with a condition like PH, it’s tough. At the beginning you’re not really sure whether you can dream, as the future seems to be tainted. When you’re told your life will be significantly cut short by a disease that no one really understands or has any know how of how to halt it, it’s hard to know what to do. It was only really earlier this year when my mental mind-set changed that my health started to react positively. During the last 6 months I have even looked to the future and actually stopped worrying about how long I have to live and focused on my life pre PH, and I believe this has been down to my new mental attitude. Apart from the regular reminder to take my tablets every few hours I almost forget now I have ph.

My latest dream has been working out how I can get out to Australia longer term. I’ve been trying every which way to try and make this happen, speaking with immigration lawyers, various medical professionals, and at the moment it has been proving quite challenging. But if having PH has taught me anything, it is to dream big, expect the unexpected, have a little bit of hope and if it’s meant to be it will all work out. Typical for me I had to fall in love with an Aussie and make life that bit harder, but then if life was straight forward wouldn’t it be boring!  

It’s been a frustrating week with a few tears, and a few “why me?” and “when will I get a break?” but walking back from work to home this evening in the rain (which I may add is a 3.3 mile walk) I have come to the realisation that it will happen, I just need to give it time. Plus I have lots to be grateful for as I am due to head out on a trip to Australia and Bali in November.  

Quite a few people in my situation I know have made bucket lists. As usual being me I like to name things differently so I have put together a dream list. Some achievable, some maybe a tad unrealistic but it’s good to have goals. Hopefully I will start to put many of these into action over the next few months/years. So here I will start my list of top 10 things I dream of achieving. I’m sure over time I will add more, as half the fun is to keep dreaming.

• Raise money for PHA charity, doing some kind of fitness competition. Not sure what this will look like yet but if anyone has any thoughts I will happily listen
• Enter MasterChef
• Travel as much as I can all round the world
• Smash my current shuttle walking test when next at Sheffield, beating my current record of 690m
• Find a sport I can compete in the Paralympics (well I have to dream big!!!)
• Open a deli/café
• Live in Australia
• Adopt children
• Be able to run 5km (for anyone who knows me, knows this would be an absolute miracle to do, but keen to give it a go)
• Live long enough to be cured of PH

As usual, thanks for reading.

Lots of Love,

Gem xx             

You are your own maker

Dear world,

Last week I was notified by Facebook that it was my one year anniversary for the writing of my first blog. I’m still in shock at how time has flown and what a journey of a year I’ve had. I remember a wise owl telling me when I reached 30 that time would just flash before me, they weren’t wrong!

This time last year I was really starting to decline quite rapidly. My hospital admissions were becoming ever so frequent and for the first time since diagnosis I was starting to take considerable time off work. I was exhausted all the time from waking up to going back to bed, literally no energy whatsoever. I spent a ridiculous amount of time in bed and I was using my wheelchair for normal day to day living. I genuinely thought this was it, the start of the decline. It was August last year when the doctors braced the subject of going down the double lung transplant route. We were starting to think about trying me on new medication including the dreaded IV medicine which would have meant having a needle 24/7 constantly into my heart to keep it working. Needless to say I was not in a good way. So to look at me now and how I am feeling is nothing short of a miracle.

As some of you will have seen on my FB post back in June, I received the best news from my doctors since being diagnosed. My heart size has reduced significantly, therefore meaning the heart isn’t having to pump as hard as before and also no longer classed as being in heart failure mode; my pressures in my pulmonary artery had reduced from a staggering 69 to an almost “normal” 29!!! (Just for context, a “normal” persons’ pressure on average is anything from 6 to 12). I managed to walk 690m on an incremental shuttle walking test (the year before I managed 250m); I am now stage 1 (best level for someone with PH) at diagnosis was classed as stage 4 (worst level); going from every 3 month review to yearly and best news of all, they are taking me off the assessment programme for double lung transplant. Yay!! No words will describe how I was feeling when they gave me my results, but all I can say is then and now 6 weeks on I feel extremely lucky that for the time being I am being given what I feel is a second chance at life.

I used the word miracle in my earlier paragraph. The definition of a miracle is “an extraordinary and welcome event that is not explicable by natural or scientific laws and is therefore attributed to a divine agency”. I’m not religious enough to think there is a being that is looking over me, although through the dark times I have felt that fate has taken me on various paths to get me here today. I am putting my “miracle” down to a number of different things.

Firstly, the medication. If it weren’t for the medication I wouldn’t be here today. That is a proven fact with PH that without treatment it is fatal. I just think my body has taken quite a while to adjust to the medication regime, as whilst it is only oral tablets they are still very invasive and dangerous tablets to take. One of my tablets can cause my liver to become damaged therefore I have regular blood tests to ensure that my liver isn’t in too much danger. In my first year of diagnosis I was taking 20 tablets a day, of which 5 of them were PH related. The other 15 were to try and reduce the side effects of these medications! It’s worrying that taking one tablet can affect other organs and therefore has a knock on effect; you then have to combat it. It’s a balancing and scientific act! In the last 3 months I have been able to reduce the amount of tablets I take to 10. The 5 are still the same for PH but I have managed to reduce the side effects by 66%! Pretty impressive I must say.

Secondly I am putting my “miracle” down to the fitness that I have been doing. Since coming back from Australia I have really been working hard most days on completing nearly an hour of fitness a day. It’s hard going and I feel absolutely wiped out after it but I just feel so much healthier. I rarely get chest pain these days and my increased cardio output means I can do so much more than I did before. My aim for when I next go to the doctors is to improve on my 690m walk. The reason why I had to stop last time wasn’t because I was too breathless or I got chest pain. It was because my legs just went dead. They became really heavy like lead. The reason for that was there wasn’t enough oxygenated blood being pumped around my body quickly enough. So my focus is to over time increase the amount of cardio I can do by increasing small amounts of cardio each week. Hopefully then I will be able to smash my 690m walk test.

Finally and I feel the strongest reason as to why I have managed to turn things around is my mental health. A lot of my friends and family said throughout 2014 and 2015 how positive I was. I thought I was too. I thought if you said you are positive enough times to yourself and not to let PH defy you that it would happen. I don’t think I was naïve to think this, I just think it was my coping mechanism at the time. So what changed? Hindsight is a wonderful thing as you can look back at the past and see what was blatantly staring you in the face, but at the time you couldn’t see it all. Looking back I didn’t realise how unhappy I had been. Obviously I had good reason to be, as living with PH is challenging, but it was the other areas of my life that I was not happy with. I used to really enjoy work and I felt I was good at it, but since returning to work after diagnosis I had changed, I realised I wasn’t as cut throat or aggressive as I needed to be in the world of recruitment.

I have also come to the realisation that I need to surround myself with people who provide me with a positive mind-set, as in the past I have found that some people can have a negative influence on my outlook.  I’m sure the best of intentions were there, however when someone regularly stops you doing “normal” things as “you shouldn’t overdo it” you then start to believe you can’t do things and you become very reliant on that person to do everything for you. It all became too much. When I made it to Australia I felt like I had been given my old wings back, and I could be the independent, happy person I used to be. It was at this point I realised situations had stopped my health from improving, not the disease itself. Once I removed myself from the world of negativity that I had been living with for the past two years, I began to see a massive improvement with my health and just general well-being. I’m sure Juzzy will take full credit for this! But on a serious note my first blog was all about fate and me falling ill at the time meant I couldn’t go to Australia. Now I have made it to Australia and hopefully as long as my health permits it I can enjoy many more trips to Australia and travel more around the world. I strongly believe everything happens for a reason and this year proves that. I wasn’t meant to go to Australia in 2013, it was all meant to be now. I am so excited for my future ahead and I dare to dream that I will be one of the lucky ones to see the cure for PH and that I can live a very happy, exciting and long life.

Love,

Gem xx

I’m not superwoman…….but I’m going to give it a damn good try

Dear world,

In the last 2 years since diagnosis I have been living a life with caution, worry, resentment, anger, depression…I could go on, but I think you get the picture. So when you add in a break up to the mix you wouldn’t be surprised if I was to completely go off the rails and just give in with life. I mean “what’s the point, right”?!

I had 8 weeks of a certain pattern, it involved fitness, drinking and barely eating, at least something good came out of it, after all, I needed a bikini body for Australia! Most people I’m sure go through exactly what I did when their whole life is completely turned on its head, but what surprised me was that my body didn’t give in. For a good few weeks after the break up I waited for my heart and lungs to pack in and just say “right I’ve had enough now”. Not because I wanted to, but added stress is definitely not advisable for someone with PH. Not only did I survive but my body showed me how resilient it could be. I was running on some kind of adrenaline and due to my stubborn nature I just thought I am going to push myself until something makes me stop. I got ill a few times during that time, not PH ill, just generally run down ill. I was really worried that once I got off the fastest speed of the treadmill when I arrived in Australia that my body was going to go into shut down mode. Apart from one blip, which I will talk about later, I’m delighted to say that I am feeling the best I have in 2 years and if I’m honest probably even before I started to become ill.

When I realised that fitness was to become my saviour I became really obsessed with it. Constantly thinking of when I was going to train; looking forward to actually wanting to train, which for anyone who knows me may find this shocking to read as I was the least fit person in the world. It was during this time I realised how strong I was and how I was able to live so much more than before. I was able to walk so much more, carry and lift so much more and even sometimes totally forget I have PH, which is something I haven’t done in 2 years.

The last few months since leaving the UK I have really surprised myself with what I have been able to achieve. Not only did I manage the 14 hour plane ride from Dubai to Melbourne, which normally would have seen me bedridden for days after, but Katie and I managed a night out 24 hours after arriving, we then travelled to the other side of Victoria 2 days later where we had a full on weekend of meeting new people, cooking and hosting for people I didn’t know, barely slept and drinking excessively, (thanks Juzzy). We then went away for a few days where I coped with lots of walks, both hilly and flat and I even managed a 4 mile walk in flip flops which on the return trip was mainly on an incline. Juzzy and I then went on a 12 day epic road trip around Victoria which saw me climb the Pinnacle Mountain in the Grampians; it was a steep climb of a radius of 4.2km. So worth it though, the views were stunning and I even managed to crawl my way to the edge for about 30 seconds before I felt sick due to the sheer drop down at my feet and needed to run down away from the edge! I barely felt breathless and apart from the odd photo break I really surprised myself at how easy I found it. 

Juzzy and I half way up the Pinnacle Mountain

                                               At the top of the Pinnacle

I spent nearly an entire day at the Pioneer settlement in Swan Hill, North Victoria, which has an interesting history of immigration focusing on all the European settlers coming into Victoria, and I spent all day walking round, soaking it all up. Again something 6 months ago that my feet after about 10 minutes would have stopped me from doing due to the swelling I would have got. I train most days for 30-45 mins at a time and not having a car has meant that I have found my sea legs and am now walking a lot more than before.

Anzac weekend was full on, again late nights, socialising, Juzzy getting us lost walking in Melbourne (I thought men could read maps?!) and then a very early start for the Dawn Service. It was just after the Dawn Service I realised maybe I’m not quite as invincible as I had been thinking I had been lately. I had flashbacks of when I first collapsed at the fish market in London, the intense heat came back, I could barely breathe, the breathlessness was insane, my eyes started to lose vision and I just became a floppy dead weight. I could barely stand up, just leaning on Juzzy as I had no energy whatsoever. How we made it back to the apartment god knows and I realised once I got back into bed how much of a bad way I was in. It was like I was paralysed, I couldn’t move anything, including my little finger. It was a really scary time. I stayed in this position for a good few hours and I can only describe the feeling as being like a frozen chicken that over time started to defrost. Weird analogy I know but in my head it just makes sense. For Juzzy who this is all new to, he remained so calm and was amazing with me. Not a mean feat for a boyfriend with a sick girlfriend who for the 4 weeks before had shown no signs of the disease at all. 

           Juzzy and I at Anzac day, an hour before I nearly collapsed. Shows how quick the                        condition takes hold from normal to not being able to move.

It’s really hard not to let the negative thoughts over take your mind and with this slight set back it did make me think it could be the start of deterioration. But after some long thinking I realised that I was just being over dramatic and in fact I had actually done really well to get this far. I’ve only had one true bad day this year, which is amazing when you take into consideration the amount of turmoil I have gone through. I actually look at my bad day now and am grateful that it happened as it made me come down to Earth with a bit of a bump and made me get back into real life. I would be forgiven for thinking that maybe I had started to cure myself of PH as I was pushing my boundaries so much. But this bad day has made me realise that yes I still have the disease however I’m in a really strong position currently and I need to carry on living my life as best as I can.

I’m sure you will have seen the mammoth amount of photos of me dashing all over Victoria. Luckily I’ve had a really good tour guide and I have seen way more than I intended too and built up a great memory bank. I only have 3 weeks left in my adopted homeland and I intend to carry on enjoying myself, hopefully with no further blips.

Speak to you back in the motherland.

Lots of love,

Gem xx

Anything is possible

Dear world,

So I’m here down under (as we Brits call it). I’ve been here exactly a week now and my god time has flown by so quickly. Feels like I’ve been here all my life and very quickly I have settled into Beaconsfield (a south eastern suburb of Melbourne). Part of that is down to the generous hospitality of Katie and Jono as well as my instant love of Melbourne returning as soon as I landed. Although when I did land I genuinely had to check we had arrived in Melbourne and not in Manchester as I could have been forgiven for thinking it was Manchester due to the torrential rain I arrived to. But luckily whilst it was raining it was still relatively warm, something that Manchester is rarely.

What a busy first week I have had. Katie not allowing me time to suffer from jet lag, booked me up with lots of new exciting adventures. First of all driving what felt like back to the UK to get to Warrnambool, a south western suburb of Melbourne where we spent the weekend. Catching up with some friends I already knew and met some new faces that I didn’t. It was the first part of our Come Dine with Me extravaganza. Trotters and Uska did the first night and wow did they go all out. Can tell they had their eyes on the prize – a wooden spoon! Ha joking! I met my CDWM cooking partner Juzzy for the first time and he turned out to be a terrible influence on me, making me down shots. Since having PH my drinking has taken a back seat (ok well maybe not the day of the brunch in Dubai – blame my mum for that one) but I haven’t touched shots since sometime in 2013. Well you can imagine the state I was in…….oh wait you will have seen the photos! Juzzy and I did our night on the Saturday night and thanks to Juzzy we were both suffering a lot on Saturday whilst we prepared our food for the evening. The food was a highlight shame our conversation was a non-starter and by 11pm I was so deliriously exhausted, jet lagged, emotional and hungover I announced to the table they were all to leave! Luckily they took it in good spirits and overall whilst our entertainment was pretty poor we had an enjoyable evening, well I did!   

 

Perfect timing, Jono had booked Katie and I into a spa hotel in Lorne, which is on the Great Ocean Road for her birthday present and a 2 day relaxing spa break was exactly what the doctor ordered, with the best body massage I have ever had. We did a few walks and a few drives along the Great Ocean Road to Apollo Bay. I do love the state of Victoria; it’s so green, unlike the rest of Australia. I think that’s why I like it so much, it reminds me of home just wish the weather in Melbourne could be like in the UK.  Now back at Katie and Jono’s I’m getting myself into some kind of routine – hopefully not too strict as I do like to be spontaneous and impulsive every so often.

You will know the story of when I was diagnosed and not being allowed to start what I had hoped was my new life in Oz back in 2013. I was led to believe that I would never make it back to Oz as my doctors were just too concerned the flight would be too much for me to manage. Plus in case I got worse whilst I was over here and couldn’t fly back. Well I’m delighted to prove the medical profession wrong and I didn’t even need oxygen! I am here! I came across a sign the other day which said “the greatest pleasure in life is doing what people say you cannot do!” For the first year or so of my illness I think I allowed my PH to dictate me, which is unusual for me, as I can be known to  be quite stubborn when I want to be! I guess maybe it was the fear of the unknown or how scared I was for my future and what that meant. I’m not sure when it instantly switched for me but since having Beth my personal trainer I finally feel slowly I have regained the control.  We know there is no cure, well apart from transplant (although I wouldn’t really call it a cure as whilst it cures you of PH the chances of you developing other diseases is very high, and there is a high chance of rejection, together it doesn’t necessarily make it the golden ticket everyone assumes it will be), but it being such a high risk process has started to make it something I’m not sure I’m willing to explore right now. Hopefully I will have a few other options first to explore than going straight into transplant. Currently I am reacting well to the medication and I would class myself as stable which is great news. But my main worry as the doctors remind me is the medication will stop working at some point, could be this year, could be in 10 years who knows but I am trying to find a way to slow this down. Now I am no medical profession, don’t think they would have allowed me into medical school with a C in Double Science GCSE, but I look at other chronic illnesses that have no cure and I know from a close connection that we can’t just always rely on the medical profession and medication. Take cancer and Multiple Sclerosis for example. I know quite a few people who have had cancer, who have pulled through it due to changing their diets, including fitness into their regime and engaging in meditation. I’m not saying that because they started to have green veg and did a bit of jumping on the spot for 10 mins that this alone cured their cancer, but I am becoming more conscious of how we feed and look after our bodies can directly impact negative or positive outcomes to them.  

So my plan to try and slow PH down is by fitness and diet. I’ve always had a good balanced diet, I was diagnosed coeliac in 2012 and this made me even more aware of what goes into food. I make all my food from scratch and with the influence of Deliciously Ella and Lean 15 I have started to have a really balanced and healthy diet. Now I know anyone reading this that has PH will be thinking how can she do fitness with PH, but starting off slowly and putting in what will feel like hard work eventually leads to it becoming possible with more ease. I spent pretty much the first 6 months in a chair, taking forever to walk up a flight of stairs and getting up out of bed would sometimes be impossible. Now I can do 30-40mins fitness a day, I’ve walked 4 miles in one day and apart from suffering with blisters (rookie mistake wearing flips flops) I am starting to live a “normal life”. I would always say check with your PH consultants; they know you better than anyone and what the state of your heart and lungs are, but even if you managed 5 minutes exercise a day whilst sitting in a chair that has to be better than nothing at all. It’s taken me the past 18 months to get to the point I am currently so it’s by no mean a quick fix and you have to be determined and passionate to do it, but I can honestly say this has to be the reason I feel so much more energized. So why not just add in one new exercise thing a day, whether its arm or ankle circles or some gentle marching on the spot for a few minutes, it will all help. I am now the happiest when I’m in my gym clothes and know that this is helping me gain a better quality of life.

For anyone who knew me as a child growing up to now, so pretty much my entire life, you would never have classed me as a fitness fanatic! I once went with my friends Dave and Dan to the uni gym. I say once as I made it only once the entire 3 years I was there! Well after 5 minutes of fast walking on the treadmill I got shooting pains up my entire arm, Dan joked and said I was having a stroke, and maybe in my defence it was an early sign of PH, who knows, but my point is I used to be so unfit and now I am the fittest I have been in my whole life. Ironic that it has taken me to have PH to get so fit! So if I can do it I believe anyone can.

Lecture over you will be pleased to know!

So what are my plans for the next few months I’m sure you are desperate to know. Well I’m looking forward to my first AFL game (it’s a well-known Aussie game that is taken very seriously over here – think a bit like rugby mixed with Gaelic football, I’ve got to brush up on the rules before the game…can’t wait!) and that is on Anzac Day played at the Melbourne Cricket Ground, again another first. We also have part 2 of CDWM so looking forward to more raucous and no doubt drunken behaviour. I am also looking forward to ticking off another bucket list point, which is to drive abroad. I have travelled so much in my life but never driven abroad and I know it’s probably not the most exciting of points but at least this way I can travel around a bit. I’m hoping to catch up with some old friends and no doubt with my impulsive character and my new found love of having fun I will be off gallivanting far and wide as much as I can over the next few months.

My first blog was named Fate and I said everything happens for a reason. At the end of January my whole world was turned upside down and at the time I thought it was the worst thing that could have ever happened, but now a few months later, I can honestly say this was the best decision I ever made and I’m now so excited for my future and whatever that brings and with whoever I end up sharing it with. 

Lots of Love,

Gem xx

PH has changed me - or has it?

Dear world,

I have learnt quite a few things about myself since being diagnosed which thinking about it now may have been there all the time, but I had no reason to ask myself about them before. I have learnt that I can face my fears; well, still not the electricity pylon phobia, but I haven’t come across a course where it’s safe to learn to climb a pylon yet and until that day comes I think I will always have that fear! Being told that I will never be able to have my own children and that my life will be reduced significantly, I have been able to handle being told that, and I have come through this a lot stronger than I ever thought I could. I think if you had known me as a teenager you wouldn’t recognise me today. I had always been independent but at the same time I was so insecure, I hated being on my own and I always felt such a weak individual. Having a year out before I went to uni really helped me and by moving away I started to learn who I was really all about. The one positive trait I can take away from having PH is I am glad to know that I am actually quite a tough cookie and I can deal with most things that are handed to me. I have had my dark moments but everything I have been told so far I have found a way through. As my dad has said to me on countless occasions in the past 2 years - put on a stiff upper lip. I’ve learnt to master the stiff upper lip quite well I think. These are probably the most positive attributes I have learnt about myself; unfortunately with most positives, there are some negative traits as well.

Looking at my parents it was always inevitable that I would be some kind of control freak. I mean my dad has to triple check that the garage door and cars are locked before we can go anywhere. What hope do I have?! When I met Andy he was so laid back and just had this relaxed style about him, no worries. I always envied him for that and for the first 2 years of our relationship I followed his lead, giving up my control freak ways and just going with the flow. I even carried on with this style into the diagnosis but eventually I could feel myself slipping from the ‘no worries life’ to ‘shit I worry about everything’. Having any disease is hard, but not knowing why you have it, I think is the worst. You can’t put it down to any reason - Oh I did this when I was younger, or I ate this, or drank that, or this resulted in me getting PH. I am a mystery to the medical profession; they can’t give me a simple shred of insight into why it was me that got this. Therefore, I have become this paranoid woman who over analyses everything, in case it results in me getting worse, or, worse still, developing another disease.

Until August 2015, I was getting to grips with how to live with the disease and apart from the odd set back, I was responding well to treatment. Since then, I have had a very up and down 6 months. In hospital, with many unplanned visits, mainly back on a monthly basis for one reason or another, then there was the talk of transplant which just started to bring all my negative fears to one place. I ended up watching one Friday night three episodes back to back of the ‘Gift of Life’. Whilst it was a great series and showed the positivity of organ donation, it was so scary watching it, whilst thinking at some point this could be me in the same position as these other people. For the last few months, I have found myself getting really impatient and snappy at the slightest thing. I can’t seem to shift the negative thoughts of my future and what this will look like.

Not one to normally cite an America statistic, but I have struggled to find a UK equivalent so bear with me and hopefully you will get the jist of my point. The divorce rate in America is 42%; for those with a chronic illness the divorce rate is 75% and even higher the younger you are to have a chronic illness. Granted, I won’t appear in that statistic for two reasons, firstly I’m not American and secondly I’m not married. However I thought it important to share these statistics as people don’t understand the real pressure and strain living with someone who has a chronic illness. Of course it’s bad for the person that has the disease, but it’s probably the same or even worse for the person who lives through it day in day out. They watch the person change in front of them and whilst they can be there to wipe the tears or carry them to bed they have the daunting future ahead without that person.    

Unfortunately, after a very tough decision Andy and I have split up. I’m not one to normally publicly announce feelings or situations, especially to the outside world, but as this was directly affected by PH and having started to write a blog about PH, I felt I couldn’t not mention it. Since being diagnosed, I have had so much support from family, friends and even strangers who I have never met, but have heard my story and want to pass on their best wishes to me. It’s been a real help and given me this sheer determination that somehow I have to beat PH. (I’m still not sure how I will do it but I’m not going to let it defeat me).  Andy, on the other hand, did not feel this same support, whenever he was asked anything it was “how is Gemma coping with it all”. To date, he has only been asked directly by 4 people “how is HE doing with it all”. I mention this as I think it is important to share. Not for anyone to feel guilty that they didn’t ask, even I didn’t at times, but it’s just the nature of us as human - your emotions tend to go straight to the person that this is happening to, rather than the one who is supporting the person.

I won’t lie; the last 6 weeks have been one of the toughest months of my life. I even think being told I had PH was easier to hear than knowing that Andy and I are over. Daft isn’t it, I can’t change the PH diagnosis but yet I find it harder going through a break up! I am currently going through a whole mixture of emotions, which is exactly what happened 2 years ago when I got diagnosed with PH, but I got through it then and I have no doubt I will get through this. I have had such amazing support from my sister, mum and dad, my best friends Katie, Lyd, Vicky and Amie  and my work colleagues who have been great lending me a sofa during the week. Everyone says to me time will heal. Unluckily for me, I’m an impatient bugger (get that from my dad) so I am removing myself from the situation and heading out to Australia for the next 3 months to go and see Katie with her new addition to the family, Benjamin. Trying to find a positive in the last month has been hard, but I am delighted to say, my health has shown that I am probably at the strongest I have felt since being diagnosed. Ironically, my heart is weak, but even heartbreak can’t make it any worse!! 

I have quite a few fears of which some of them have come to the surface in the past few years. I think it goes back to a control thing or lack of and therefore exaggerates the fear even more. One of the fears is flying. Silly I know, I have travelled the world by myself and been on countless flights alone but still it’s always been something that I hate. Since having PH I have been on a few flights, building up my hours each time to check I am ok on the flight. Physically I have been fine, but my issues have been more mental. When we flew back from Florida last November I got myself into such a state of panic that this in turn affected my breathing which then made me instantly think my PH was getting worse and think how was I going to survive the remaining flight at 40,000ft?? I came off the flight saying I would never fly again! So when I decided I needed to do what I do best and head off to warmer climates I thought I need to face this latest adversity head on. So I booked myself on to the Virgin Atlantic Fear of Flying course. I headed to Birmingham Airport to spend a whole day with 100 strangers all who have a fear of flying. It was a great day and ended with me on a 30 minute flight and I managed to not have a panic attack, and with some controlled breathing techniques I learnt and watching the “horizon” of a water bottle I am ready to board the flight to Dubai and Melbourne and head off to exotic places.

So I have lots to look forward to in the next few months. It just goes to show fate has a weird way of turning things on its head! There was me, planning a wedding and now I’m planning my Aussie adventures, at least this way will be cheaper!! My PH centre at Sheffield have given me the ‘all clear’ to fly and I have my 300 Viagra tablets to take through the airport, will be an interesting conversation if I get stopped at customs! I am back just in time to welcome my new nephew and then will be heading to London for a few weeks to help Leah out with two young ones. I will also get to spend time with my two best friends this summer, who live on either ends of the world, so I have lots to look forward to. If anyone fancies setting me up on a blind date I’m all ears!!  

2016 wasn’t the year I thought it would be. But that’s the beauty of it all, I suppose, life would be boring if it was meant to go the way we all planned.

Lots of Love,

Gem xx

PS. I have a beautiful wedding dress for sale if anyone needs one!

Pension pot or shoes and handbags??

Dear world,

As if this is my 9^th blog!!! I never really thought this would last anywhere near as long as it has, the support I have had from everyone has been amazing, so thank you all again. I have to admit though; this blog has been the hardest to write. I’ve had total writers block! Maybe I need to go and find myself in a forest where there are no distractions and then words will just flow out of me. But as life doesn’t slow down for anyone, I will just have to take the respite I am having from staying with my mum and dad.

So belated happy New Year to you all and your families. I hope you all had a good Christmas and New Year, albeit it does feel like a lifetime ago now doesn’t it. We had a busy Christmas, at Andy’s mum and dads on Christmas Day, which was my first experience of not having Christmas at my family’s house, bar the Christmas I spent in Sydney in 2006, where Katie and I ended up having a Greek Christmas meal on Bondi Beach front that cost us more than our weekly rent in a squat that we lived in! Fun times though. And it was the first time I tasted halloumi cheese which I very much enjoyed, even though it does squeak when you eat it, still find that a weird concept. We then spent Boxing Day at my mum and dads along with my sister, her husband and my niece. Marissa is just about at the right age now to get into Christmas. Granted she doesn’t really understand the whole Father Christmas story yet but she was quick to learn that most of the presents were for her and she opened them in rapid speed. New Year we were with friends and their 6 week old daughter. It was a messy affair with the boys and Amie doing shots in between the courses and whilst we didn’t do an official countdown (completely lost track of time) it was still lots of fun. So much fun that it took me 4 hours to get off the couch the next day as the room was still spinning. Good job I’m off the warfarin!

New Year’s Day will always be a poignant anniversary for me, as it was New Year’s Day when I nearly died (not to be dramatic in anyway), and was diagnosed with PH. Funny how quickly your life can really change with no warning, it just hits you. Well I am 2 years into having PH and I am delighted to be able to write that I feel the strongest I have felt since that dreaded day in London when I collapsed. The doctors are putting it down to the increase of the Viagra, I on the other hand have two theories. Since October I have had my very own personal trainer and each week slowly but surely I can feel myself improve. In 3 months I have doubled the amount of cardio I am doing (granted it’s now a massive 4 minutes) but it’s still a massive improvement from where I was last summer when walking up the stairs was a real challenge. My other theory is since the mention of transplant in August and going to meet the transplant co-ordinator in November, I think my body has decided now is the time to show that it can be as fit as it can be so that transplant isn’t on the radar just yet. I am slowly coming to terms that one day it is likely I will need a transplant but if I can delay that in any way by making myself as fit and healthy as possible then that’s my plan.

I stand by what I said in a previous blog, the hardest part of having this illness is the mental side. Granted the physical side when it’s at its worst is horrendous, but the mental side whether you are physically good or not is always there. To be told your life will 100% be significantly cut short is really hard to hear, and even harder when they can’t tell you how long you have left. Will I reach 40 or 50 or 60?? When you are poorly you just think its par for the course and live day to day, not thinking about the future. But as I am finding now when I feel, can I even say it without jinxing myself, “normal” I have started to consider more about the future than ever before. No one ever knows how long they will be on planet Earth for, and I’m sure if Richard Branson has his way we will all be up in Virgin’s Galactic in no time, but everyone assumes at least till pensioner age. So as most of my friends are now starting to build their retirement pot so they don’t have to work till they are 80, I’m at a bit of a cross roads. Do I join them and save all my extra pennies for the future on the off chance I defy all the odds and survive well into my old age, or do I spend my extra pennies on luxury treats as I won’t  be here post 40?! Cos what use is having all this money saved up when I can’t spend it from the grave?! Unless I am in luck and they have designer shoes and handbags up in heaven, then I will be in my element!

I look at this recent conundrum as a positive one. My health is for once stable and letting me get back to normality and to be even thinking about the future and whether I need to be sensible or just totally reckless shows that! I am hoping to whoever I need to pray to that we can find a cure and that I will be one of the lucky ones to hold out until that cure is found.

As always thanks for reading.

Lots of love,

Gem xx