Friday, 29 June 2018

Local MP Letter

Dear Readers,

So this evening, is an unexpected blog post. I didn’t expect to be writing this. Today, after work, I arrived home to an official looking letter. Yes, it was a letter addressed from the House of Commons. I had not expected a letter back so soon or if any letter would arrive. As last week, I had written back to my local MP to address the letter I had received from Jeremy Hunt. 

To my utter horror, I needed to address the part of Mr Hunt’s letter, stating smoking and obesity to be an underlying cause, and that initiatives were in place to reduce numbers of cases of Pulmonary Hypertension, is in fact an incorrect statement to make. This is very worrying that people in this position of authority do not get their facts right or do not do enough research to address what’s been said. I felt astonished that the things which were said, were so incorrect. 

So now I’m here addressing this further letter from my local MP, Mr John Spellar. Firstly, I have to say that even his letter is a complete let down. Why in the first place could this man, at least attempt to try and take some interest in Pulmonary Hypertension. No, Instead he presents me with a cop out. This man seems to have no care about what his constituent is saying about Pulmonary Hypertension. Also, to even say that obesity is a contributing factor is so totally wrong! 

I’m putting this matter straight! Neither smoking or obesity contribute to Pulmonary Hypertension! I myself have CTEPH. CTEPH is caused by blood clots turning into fibrosis tissue which then in turn narrow and block the arteries. This then over time makes it difficult for blood to travel and pump round the body properly, which then eventually starts to cause heart failure. 

I know of many people now who have PH and some have PH through other diseases, some through problems with the heart. Children get PH and I don’t suppose these children are smoking 50 a day now, are they!! 

I find the comments and statements in these letters totally ridiculous! Where are we even getting these ideas from?? 

Therefore, here is the letter from today that I have received. Make of it what you will... For me, it is beyond words...



Thank you for reading

Sharon

Monday, 25 June 2018

Cornish Holiday

Dear Readers,

So back at the end of May, beginning of June, I went away on holiday to Tintagel in Cornwall. When I booked my holiday, I decided to go away for the whole week. It’s the longest time I’ve been away on holiday since having my PTE operation. I was somewhat apprehensive about being so far away from home. 

However, being away for the week was a massive accomplishment for me as I worry about being ill when I’m away from home. The last time I was away for a week was back in August 2016 and from what I remember of this holiday is that I was far too ill to be there and which in turn caused me a whole heap of trouble. If I had known at the time that I was walking around with heart failure and a medical condition called CTEPH which could have killed me, then I would never had gone. I guess in my mind I wanted to carry on doing the things I enjoyed but by this point, it was far too difficult for me to walk very far. The trauma from this time, gives me anxiety, but this time I managed to get over the awful feelings of that time and put it behind me.

When I arrived in Tintagel, it was around half past 5, so this left me using that time in the early evening to recover from the journey to Cornwall. I became accustomed with my surroundings and made myself a late lunch. I felt quite at peace with the beautiful surroundings even though a storm began to brew. It was funny that evening as we had thunderstorms at night. As Tintagel feels like a mythical place, I just thought it was a Cornish weather thing. Later on, I found out from back home that the storms had been quite bad. I find myself quite amusing now and a bit dippy at best! But this is me all over. 

The many days I spent in Cornwall, I did some major venturing out. On the Sunday, I decided that I would venture down the road to Tintagel Castle. Tintagel is a quaint little village on the North Coast of Cornwall. It is renowned for it’s association with King Arthur and the Knights of the Round Table.  The main attraction there is the Castle ruins which stands on the high cliffs. Arriving there, you can almost feel that it’s a mystical place to be. As I began to walk the hillside path down towards the bridge of the castle, I began to wonder how on earth I would walk back up when I had finished. Luckily for me, I spotted that there are Land Rovers that will take you up and down the footpath. This was a good thing to know, as by the time I’d finished my tour around the castle ruins, I was in no fit state to get back up. 

One of the many challenges I face now after having had surgery, is my ability to walk up hills. Some people make think it’s too much of a challenge so won’t attempt it. However, me being me, I’ll try anyway. When I actually arrived at the bottom of the cliff to the castle, I found it somewhat daunting as I didn’t think I’d be able to get up the steps  to the top. So I spent the first 5 minutes at the bottom of the cliff psyching myself up. Eventually, I began the walk. Thankfully because the steps are narrow, people had to stop start, which was a good thing for me as I would have found it hard to get to the top with people behind me. Eventually, when I arrived at the first section of the castle, I needed to stop as I was starting to struggle to breathe and could feel my heart pounding out of my body. I sat for at least ten minutes, whilst taking everything in around me. 

       


 

After achieving getting this far, I knew I must carry on. So each part of the cliff that I continued to walk up, I made sure I took my time and had rest breaks. What I wanted to see more than anything, was the bronze statue of what I interpret to be King Arthur and Excalibur. I think it’s up to the viewer to decided what the statue represents.



Moving on from the myth of King Arthur, I visited many other places, which all had their fare share of hills. Another beautiful place I visited and very much enjoyed was Port Issac. I didn’t see Doc Martin though, as this place is associated with the programme on ITV. Port Issac is quite hilly. I decided it was a great idea parking at the main car park, which getting back to when your legs are in pain, isn’t the best. However, I have learnt where it is best to park for future reference. Port Issac is a an idyllic fishing village with many little quirky shops. I like those little shops with little unique gifts. I spent my money on a Port Issac sweatshirt and mug. 

                  



Whilst I was in Cornwall, I also visited some National Trust properties, as I always do now I am a member. I visited a place called Lanhydrock, which is near to Bodmin. Lanhydrock is a  magnificent late Victorian country house and estate. In 1881 the house suffered a devastating fire. However, the house was refurbished  in high Victorian style by its then owners. 





I enjoyed many things that week, but what I enjoyed the most was getting back some normality in my life. As I have had a life saving operation, it is important to me to do all the things that were before too hard for me to do. Yes, I still find a lot of things trying or exhausting but this time I feel like I’ve been given back my life so why waste what I do have. I have distal clots which affect my ability to walk up hills and for walking long periods of time, but I still try at my own pace which is comfortable for me to do. I think this is what helps me each day - knowing what my capabilities are and limits, which I didn’t listen to before. 

Thanks for reading. 




Wednesday, 20 June 2018

Letter to MP

Dear All,

It’s been a while since I last wrote anything on my blog. So tonight, I decided that it’s about time I started again. Tonight’s subject is all about writing to my local MP. 

At the start of the year, I decided to write to my local MP about PH. I felt it was time to start trying to put my message across and raise the awareness. My decision to do this was based on the fact that I’ve found that a lot of PH patients have found that it has taken a long time to be correctly diagnosed. Many, like myself have had this condition for years without knowing. I found myself at stage 4 heart failure before anyone could correctly diagnose me and this I found to be overwhelmingly, traumatic. I never realised how much this had affected  me until recently. This was when I partly decided that something needed to be done. My belief is that no one should have to go through what I did. I very much want to see a change. 

My first letter wasn’t entirely what I thought I’d receive from my MP. My MP decided he would take the matter up with Jeremy Hunt. This he did and I received a letter back. To my dismay, the first letter from Jeremy Hunt, turned out to be very generic and seemed like a ‘copy and paste job’. So after some discussion with PHAUK about the letter I received from Mr Hunt. I decided it would be a good idea to write back to my MP explaining that the answer was not really answering my questions. So then came the response from my MP that he would demand answers from Mr Hunt if I wrote back to him in another letter. This I did and so the letter was passed on to Jeremy Hunt.

In April, I had wrote my second letter to Jeremy Hunt which was three pages long. Now looking back, it feels like I have wasted my time. The letter I had from the Secretary of State was unacceptable. What made me more angry than anything was calling ‘tobacco and obesity’ an underlying condition of PH. Well Mr Hunt, all I can say is either you need better advisors or you need to do better research. I still now, do not know where his logic is coming from. How are these initiatives really going to help when it’s to do with tobacco and obesity...?  This wont help someone with PH!!!

PH is caused by many things. My type of PH was caused by blood clots in my lungs that formed into tissue that caused blockages in my lungs which then created the high pressures from my lungs to the heart. However, this is not the same for everyone. 
There are five types, of groups, of PH: 

Group 1Pulmonary Arterial Hypertension
  • Connective tissue diseases (certain autoimmune diseases)
  • HIV
  • Liver disease
  • Congenital heart disease
  • Sickle cell
  • Schistomaiasis                                      
PAH  can also be inherited and in some cases appears with no known cause

Group 2 PH
Is caused by conditions that affect the left side of the heart. 

Group 3 PH
This includes certain lung conditions:
  • Interstitial lung diseases
  • Sleep apnea
Group 4 PH 
Blood clots in the lungs and other clotting disorders also known as CTEPH 

Group 5 PH
  • Polycythemia
  • Sacrcoidosis
  • Thyroid disease
This is just a quick break down, just to show causes of PH. So when someone comes out with a completely ridiculous comment, it does make me feel quite angry. I’m no medical expert, but I can do enough research to find these answers out. I feel it’s a pity that Mr Hunt could not do the same!

My conclusion to all this is that, this man does not particularly care and as always talks his way around it. Never giving a straightforward answer.

I shall continue to peruse the subject in what way I can, and I hope that the information that I have now provided to PHAUK, can make some kind of difference. My letters have been forwarded to PHAUK and they seem to want to use them with a strategy they are currently working on. I truly help this will help make the difference I was looking for in the first place. 
\



















Sunday, 18 March 2018

Support Groups

When I was diagnosed with CTEPH, it became very clear to me who would be able to handle my diagnosis and stick around. Those that couldn’t soon disappear and those who didn’t want to understand made this clear - and they know who they are! Unfortunately, this is just one of those situations where tragedy occurs, where it brings to light who is worth it and who isn’t. It’s a hard lesson to learn but still one that has to be learnt so that you can become stronger in yourself. In fact, if it wasn’t for wheedling these people out, then I wouldn’t have come to realise how strong I truly am. 


Moving away from this, several of my friends really did make a big effort and came out of their way to see me. My one friend Claire went to great lengths and came all the way from Manchester to visit me whilst I was staying in Royal Papworth Hospital. This meant a great deal to me at a time, when I was starting to feel like no one actually cared about me or what was happing to me. It’s quite a lonely place when you are so far away from your own home and there’s no one to keep you sane or keep you positive. Seeing her brought a smile to my face. I wished I’d been in a better state at the time as I had hardly any voice and all I wanted to do was chat lots. Also, I wasn’t exactly looking my best at the time, but I’m sure that didn’t really matter. I thank her on here because I will never forget what a true friend she was to come out of her way to do this.

So anyway, this leads me on to what the point of this post is about. This weekend I decided to go to a Papworth support group. It wasn’t until recently that I discovered that there are groups on Facebook that you can actually join. I think it was around September, last year, that I discovered the PHA group and following this I then found out that there was a separate group for CTEPH patients. Both groups have been amazing to join as I’ve felt like there are people there that understand and you can always ask for advice. Discovering both these pages helped me also find the Papworth support group too. 

So on Saturday, I found myself driving all the way down to Cambridge to meet people that I’d already spoken to online, on the two pages I’d joined. I was feeling a bit apprehensive at first because I wasn’t sure how things would go and I’m always a bit quiet to start with. When I arrived, I had a lovely, warm welcome from a lady called Michelle who was introducing me to people. I started to feel quite relieved and at ease.  I did start to feel as though I’d known them for ages after chatting to them for a while. 

The talk was given by one of the PH nurses’ which was very informative and talked about balloon pulmonary angioplasty as well as pulmonary endarterectomy. As you all well know, I have had a pulmonary endarterectomy so I’m already converted to the idea. I learnt more about it whilst there and new things I hadn’t realised. I somehow wished I’d known these things beforehand but not that it really matters now. 

So the importance of support groups is a great thing to have. Having a rare illness, you think there’s nothing out there for you. There are so many cancer support groups and other such groups out there but not much for us ‘rare’ people. It’s an amazing thing to have, when you find it, as you can talk to people who actually understand what you’re talking about. Saying to other CTEPH patients that sometimes some people don’t always get it because if you’ve had the operation, people will just look at you and think, well you’ve had an operation so you must be fine. I find quite frustrating.  Although, I’ve had the operation, what they don’t understand is that I still have PH due to still having clots in my lungs, that are in very awkward places that can not be removed. Trying to explain this to people who are well and do not really understand this illness doesn’t always work. In which case, there’s no point explaining it. 

I do try in many ways to educate people on PH. Having said this, people do not always want to listen because it’s not happening to them. If it’s not happening to you then why should you care? Well, we never know what’s around that corner, do we? One day you could be perfectly fine but then the next it could then suddenly develop. 

It’s been a long path to get to this point but a path I’m glad I’ve found. 








Tuesday, 30 January 2018

Coughs and Sneezes spread diseases

Dear All.

It seems we are still in the cold and flu season at the moment which hopefully will be ending quite soon. However, it occurred to me today that although a simple cold or cough can be harmless to most, there are some people that once getting a cough or cold can struggle with their health because they may have a pre existing health condition. 

I have PH and luckily so far this season I’ve only had minor colds. I tend to dread the winter months because of chest infections. Once I get a chest infection I struggle greatly with my breathing and this can therefore knock me off my feet. Several of my friends also have asthma or COPD and so if they catch anything, they too struggle. 

The most annoying part about living with a health condition is that sometimes people do not have consideration for others that have health issues. Although, these people can cope much better with a cough or cold, we don’t. So when someone decides it’s a good idea to sit near us, we do not appreciate it! I sometimes feel that these kind of people do not have the understanding about us and how we try to cope. I know myself when I only had a mild cold this winter, I did feel as though I was somehow having some panic attacks because of the feeling of not being able to breathe. This certainly is not a nice feeling and feel that for me that this fear of not being able to breathe comes from just before having PTE surgery. At the time, there came a lot of trauma about the situation and so some of it has stuck with me. This is the reason that I don’t want people near me if they have got colds or infections. I do not appreciate it. 

Also, what is very annoying about my condition is that most people see me as someone who has had an operation so this apparently means I’m fine in some peoples eyes. Yes I have had an operation but I am not totally cured because of the pressures in my heart from the lungs. I still have a certain amount of scarring left which I now take medication for. Some of these medications actually lower our immunity so can be quite easy to catch things. 

I find there are a rare few that will tell me if they have picked up something and will say to me to steer clear of them. I do not mind this because I know that they are considering my health for me and I’m certainly not offended by this. I much prefer people to tell me. In the meantime, though, I feel I have to be a bit rude and say that I don’t particularly want someone who is ill around or near me. Although, some do NOT take the hint! 

Sunday, 28 January 2018

Friendships

Dear All.

It’s been nearly a month since last writing a blog post. So today, I thought I’d write about friendships. 

Having this terrible disease can make and break friendships that we have. For a long time, it has bothered me that one of my what I thought ‘close’ friendships came to such an abrupt end! I knew this would eventually happen due to the circumstances that had happened prior to the breakdown of the friendship. However, I feel that the final nail in the coffin which was the illness itself. In my heart, I knew this friend had no real belief that my condition was serious. Even if she did, I know that she certainly did not care. 

I feel that during the last year of my illness (before my diagnosis), my behaviour was irrational and very much regretful. Every day was difficult to cope with. The illness consumed me. Maybe I didn’t help myself with how I behaved, I was so frustrated I had no idea of how to behave. However, when looking back, I see someone who was desperate and struggled to cope with an undiagnosed illness. I see someone who was frustrated by an illness that no one could diagnose or that no one would listen to or take seriously. Even some friends did not believe anything was wrong with me even when I was diagnosed, which is shocking in itself. 

By the time my illness was diagnosed, in someways it had come too late. It had completely destroyed a friendship that I very much cared about. 

So what did finally seal the deal for me. I guess the answer would be when I was in hospital. Arriving at a PH specialist hospital came as a relief but it also came with some loneliness. If I’m honest, a great deal of loneliness... I knew I was in the right place but I was missing the special friendship that I’d had. The one person whom had always mothered me and cared for me, wasn’t there, and didn’t care anymore! I held off from saying anything or telling this friend what was happening to me. However, what changed this was that whilst I was being assessed in hospital I had a fainting episode which was quite bad, so bad that I was rushed down to critical care. A few days after this had happened and the decision to keep me in critical care, I was told that I was in urgent need of of surgery and without it happening fairly soon I would die. After hearing these words, I decided that I couldn’t keep this to myself and with fear of dying and wanting things to be right again, I took the decision to write an email to this friend whilst in critical care. As far as I was concerned, it was my last chance but I also needed her to know that it was very much real and that I had no idea how thing were going to go. All I kept thinking was that i was hanging on to life and had no idea if I’d make it through. I had no clear vision of my future at that time. 

Sadly though, this was the final straw for me. The heartbreaking truth came back to me. There was no more care anymore, the words spoke volumes to me. More so because of virtually tellying me that she no longer cared in a cold, callous tone that she spoke in her email. 

I will admit that, that night, whilst lying in my hospital bed, the night before my op, I was breaking my heart, trying not to cry because the words cut so deep into my very soul. I was heartbroken but trying to keep myself together. So what came next was my choice to cut this person from my memory. The morning I went down for my op, I decided that she would no longer exist in my memory. I remember the change happening then. If I woke from the op, that would be it, no going back. No more care from me either. 

After two days, I eventually started coming round from the operation. The only things I do remember from that time on was working on getting myself better. I felt better when I arrived back on a ward. There were people to talk to and it didn’t feel so lonely. Not like when I was stuck on critical care for over a week. There were people I could chat to. You can’t really chat to many people in critical care as the majority are coming round from ops. 

So where did this leave me in the end. Well it left me with determination. Determination that I would not be defeated by anyone or anything. It also left me with a sense of purpose. I know where I want this all to take me and it means putting my efforts into those things that are worthwhile. 

Yes, you may have hurt me with your words, you may have thought you broke me with your actions, but you did NOT! I will never forget what you said but I will remember that I am the better person for not allowing you to defeat me no matter what has happened. 

A month on from the day of the op, I did receive a phone call from that friend. I do recall thinking to myself, seriously I’ve not thought of you for the last month and now you do this! Anyway, I did think about it over the next couple of days and did send a message asking why phone me? The answer that came back was that it was a mistake... 

PH can be very testing but in the end you see the final truth. You see the people who care and stick by you no matter what. These are the friends that you have to hold onto. These are the people who matter.. Not the ones who couldn’t care less! 

Thursday, 28 December 2017

End of the year - New Year

So Christmas is over and we are coming up to the New Year. I know some people tend to not like New Year, I myself do not always seem to like it much myself. However, this year I do not mind it so much. To me it means I’ve managed to make it through a whole year since my operation. It’s been a year filled with what I now call FIRSTS!

Until last year, I struggled doing so many things. Everything seemed so frustrating at the time. My main frustrations were not being able to walk very far. Although, it had been a gradual descent over the years, last year had become the most noticeable for me:I longed just to be able to get up a flight of stairs without having a rest half way, I also longed to be able to do just ‘normal’ things with friends, without getting exhausted. At times it was completely embarrassing that I was not able to walk more than ten yards without getting out of breath! The most frightening time I had with my deteriorating health was on holiday, last August. Now I know it was the biggest mistake I could have made to go when clearly I wasn’t well enough to be there. I felt I could cover up just how bad I really was. I had no explanation for why I had got this bad, so it seemed easier to pretend I was O.K. The worst memory of this holiday, was when I had to try walking to a place where there stood some ancient stones. I recall getting out of the car and trying to make my way across the field. I literally had only walked a matter of yards and was beginning to struggle to breathe. My chest began to feel like it was constricted and the palpitations began to start. I almost felt as though I was going to faint. I saw some small stones in front of me and had to sit down on them  to let the feeling stop. I remember feeling tears welling up in my eyes because I felt overwhelming frustration and anger. All I wanted to do was to be able to walk. In the end we had to give up because I would have had to walk miles. I couldn’t walk yards, so miles would have probably killed me! That day continued to prove awkward for me. The next place we visited was an old castle ruin. Places like this I truly love. They have this sense of atmosphere about them. Unfortunately, the overwhelming fainting feeling returned once more. I decided I want to walk up the stairs to get to the top to see the view of the Scottish land. There wasn’t just one flight to contend with though. As I began to walk the winding staircase to the top, I gradually started to fell the dizziness, breathless and the racing of my heart. I made it halfway, but then started to feel a panic attack emerging. I had to get back down to the bottom. When I arrived at the bottom, the feeling was still there and I thought the panic would not end. I was asked what was wrong and my response was that I felt funny walking up the stairs. The surprising response I had to this was a roll of the eyes, like I was deliberately trying to be awkward. My feelings were hurt by this but I kept quite and said nothing. That day ended pretty badly for me. Instead it turned me into someone who was apparently ‘just being awkward’. Because of it, it started an argument. One which I had not expected. I passed the situation of as nothing being ‘wrong’, however, this was not accepted as an answer, so I then said how hard I found it to walk. That was it then, a torrid of abuse came flying my way. I was certainly very shocked by the outpouring and was told, ‘you just have to get on with it’. I guess I was too stunned to give any kind of cone back, and to let the abusive words fall from that persons’ mouth. It’s something I shall never forget and I don’t think I’ll ever really forgive. 




So I guess this is part of the reason why this is my year of ‘FIRSTS’. I guess the awful feelings I had back in 2016, mean to me that everything that held me back, hasn’t really done so this year. All those things I longed to do when I felt so ill have not got in the way too much. My walking distance has gradually increased and I have learnt to adapt to this. I see now how bad a state I really was in, which took me a while to realise. Having had an operation, I can see the benefits. Although, I’m not 100% cured and still have residual PH, I make the most of things in my life. 

So if you ask me if I hate New Year the answer is ‘NO’ because it’s one more year that I have made it! It’s another year of doing things I dream of doing. I like to make the most of things because you never know when things can change and mean you can no longer do the things you want to do. New Years are not so bad to me after all. Although, last year I was most certainly glad to see the back of it! It meant to me that I could begin again. 

Wednesday, 13 December 2017

GP

Along this journey with PH, I’ve had good and bad times with medical professionals. Tonight proved to me that some are really dedicated to their job. I have one amazing GP who works at my surgery and is always very thorough with anything medical wise with me.

I received a phone call about a form I was given by Papworth to hand  in to the surgery, about having a heart monitor for 48 hours. The phone call also turned into a chat about my blood test results. Recently my test results have been coming back showing I’m slightly anemic. The doctor took the decision to prescribe iron tablets which is probably what should have happened on Monday when I visited the doctors but unfortunately I did not see the same doctor, so I came away feeling like this other GP was being a bit haphazard about things. The GP then also then phoned back and told me he thought I should have a thyroid test because of my rapid heart rate, just in case something had been missed. I came off the phone and felt highly reassured by what he had told me. It’s a real comfort knowing someone is taking things seriously.

When you have a serious illness like PH, it can bring some worry with it. I’ve seen various medics over the last few years and sometimes it has been completely frustrating as sometimes you’re not listened to. I can’t say that this goes for everyone. However, there are some medics out there that aren’t as good as others.  Tonight I felt the comfort of knowing that someone other than Papworth is keeping a watchful eye on me. Long may it continue as I’d be lost without this GP whom does his upmost for me. I can not praise him enough!

Tuesday, 12 December 2017

PH drugs

Today reminded me of many things about life and PH. I had an appointment back at Papworth, just to check how my new PH drugs are working for me. As I sat in the outpatient department, it reminded me how PH patients all differ from each other. Two older men were in the waiting room, both sat with oxygen tanks on their laps. I really felt for them and wondered how they manage everyday with the constant breathlessness, tiredness and everything else that comes with PH. Then my thoughts were taken from this and my memories came back to me when I saw someone who strongly reminded me of someone I once knew. I don’t know if it was the mannerisms or just the look deep in the eyes but it was something so familiar to me to me. I have to admit but these kind of reminders always take me back to happy times, but then becomes marred with anguish at the awful memories of last year and feeling of being dreadfully let down.


Anyway, now back to my purpose for my visit. In November, I had, had a right heart catheter performed on me. The only description I can give of it is that a long wire is fed through a vein in the neck, down to the heart. The results from this simple procedure were that my heart pressures had worsened since I had the test last done in February. It was very unexpected news at the time and made me realise now that this is now something that isn’t going to go away. This being something that has been confirmed to me today.


Since November, I have been taking a cocktail of two PH drugs - macitentan and riociguat. Originally, I took macitentan with sidenafil from last November last year to February this year. In February, they stopped the macitentan and kept me on the sidenafil. They were delighted by the progress I had made taking both drugs, so felt that taking the one away and replacing it with another new tablet would work out well for me. By June this year, it was decided it was now time for me to try the riociguat. I guess the hope would be that I would be ok on just the riociguat, however, this was not to be the case when I had all tests performed on me back in November, they didn’t all come back as good as it was first thought. My first reaction was one of shock, I somehow believed that there wouldn’t be an issue but I knew in my heart that deep down, not much had changed for me. I was highly aware that I am not the same as my peers and struggle to keep up with people. I do not outwardly show this, but I feel it in my body.


So today’s decision is for me to now move back to the sidenafil rather than taking the riociguat with the macitentan. I guess I knew this would happen but I had hoped that the combination of the two would give me outstanding progress. I wish I could say I somehow feel lots better, but I guess I feel more or less the same. Although, it seems to sound awful, it’s nowhere near as awful as I felt last year. Giving the plus side, I can now walk that bit further than I used to and I am no longer passing out on people. Also, I know I’m in the care of specialists who are working to find the best PH drugs for me.



Wednesday, 6 December 2017

No angel

Every side has two stories. I’m certainly no angel but I never mean to hurt people. Unfortunately, I feel I really did hurt someone with my actions. However, I wish this person could take the the time to actually see the situation for what it was. That someone else was not being entirely truthful. This I feel is for that person to find out but only time will tell if that will ever come to fruition.

So in the time before my diagnosis, I did some of the most ridiculous things imaginable. My one regret is to allow myself to be took advantage of. It wasn’t until I spoke to a councillor (set up through work) that I really realised what had happened. When I was signed off sick and could no longer work due to my deteriorating health, I could have 6 free sessions through works occupational health. I decided that this would do me some good as I could talk about my frustration with my health. At this point, I knew what was wrong with me but I was waiting on a list to be seen. During one of my sessions, it came out about what I had done to someone who had always been a good friend to me. I guess telling the other side of the story to do with what had happened, all the truth started to flood out. The counsellor who was very wise, stoped me in my tracks. I can’t remember her exact words but she pointed out to me that I had been taken advantage of. She started to explain how some people see a weakness in others and then take advantage of this situation. I started to realise that being ill had been a perfect opportunity for me to be took advantage of by this person. The whole idea of me losing my senses and acting way out of character shocked me.

On top of dealing with a life threatening illness, I now had to deal with the fact that during all the time I had been ill, I had let this happen to me. I felt mortified that because I felt so sorry for myself at the time and could not believe that I had done what I had done. I honestly don’t really even know what I was thinking at the time but I know the whole series of events just disgusts me now. Maybe I thought that ‘this’ makes me feel better about myself. It’s no reconciliation to any other party because at this point the damage had been done. Damage that I am now sorry had happened.

Looking back now it feels so shameful I would be so stupid to do such hideous things. It was not in my nature and quite out of character. How was I capable of such things? My only reasoning now is someone’s persistence. I had given in thinking it was easier to do this. It always seemed so much easier to go along with what was said now thinking back. Although, all the time it made me feel guilt ridden. I didn’t want this to be happening but sadly this was what it was. Now it breaks my heart to realise how stupid I had been.

So what am I saying here? Illness doesn’t just spoil relationships, it also brings out the devious side in others around you. Others who see your weakness and then take advantage. Illness can bring out all sides to people. It can frighten people, make them try to avoid you as they can’t face what’s happened. There are so many other things, but it can bring out the best in others who want to be there for you, do things to help you or even just the simple things like encouragement and laughter. Not everyone is bad. It's just unfortunate that the wrong kind of people were around me at the time.

My saving grace are all those good people who were around and there. Without their encouragement and support, I don’t know how I would have got through such an awful time with this illness. I am here and I am here to tell the tail. My whole purpose is to tell my story because I SURVIVED!!

Local MP Letter

Dear Readers, So this evening, is an unexpected blog post. I didn’t expect to be writing this. Today, after work, I arrived home to an offic...