CHRISTMAS APPROACHES!

When you haven't got all your brain functioning xmas is filled with happiness and madness! I have bought presents and wrapped but now no idea what they are so when santa delivers them it will be a surprise for us all!!!! I did have a very bazaar present come through the post I must have pressed the wrong button by mistake, was tempted to keep it but it really was of no use to anyone ha ha.

After a down week with a kidney infection and blood results not the best and don't know why… retest in 6 weeks, so I will put it out of my mind for the time being, got enough in there as it is!

Back to the gym this week only the once this week hopefully more next week and one swim. The gym was ok after 10 days of nothing, managed to keep up on the bike and then the walking machine had a mind of its own, felt like i was on only fools and horses, the speed and incline stuck at my hardest point so i shouting for the chap to come over, he said  "oh no idea whats happening just stop when you want to????" heap helpful so after bashing all the buttons something worked and i could slow it back down… was a bit like a comedy sketch!…and we always walk out of the gym like we have been dragged through a hedge backwards and then stumble up the steps to home but back on track it seems for a mo.

A YEAR HAS PASSED!

I remember Nov 11th last year. I was in Bristol spires hospital for a virtual colonoscopy to have my 5 year routine check to make sure nothing has come back in the colon. SO no great shakes, thought be better to have a virtual one… But they couldn't give me medication as I was on a heart tablet so went ahead without and the air they put inside you is expected to be a little uncomfortable, but I was in excruciating pain!… I could hardly breath…. I was saying to myself "man up for goodness sake" its remembrance day... think of all those that gave their life for this country and you are thinking you are in pain!… I was getting quite cross with myself quietly!… It was over and i still was in pain, the nurse was concerned and sat me in the waiting room… I remember standing for the two min silence in the hospital and nearly passing out… I travelled back home to cornwall… Pete promised me lunch out but I couldn't stand and felt so poorly, which was odd and shouldn't have happened there was no reason for it. 

So the next 48 hours my breathing pain was worsening, so on the Friday after the Wednesday i went to the GP who rushed me down to hospital with a suspected perforated colon. I was poked and prodded and admitted. About 10.30pm that night the doctor came around and said although i was in pain on breathing in, they would not scan at the weekend, and i seemed sensible so go home and rest… i thought it was odd, but thought might as well be at home if they don't know what is the problem is and no tests over the weekend. Over that weekend i got steadily worse and on Saturday night i was up most of the night as could not breath laying down, Sunday was the same, and the pain by Sunday night was really bad my breathing was so shallow i felt faint. I was rushed back in on Monday morning and told the hospital my breathing was worse. They scanned my abdomen and said nothing wrong, i couldn't seem to get through to them that i couldn't breathe. I don't moan very easily so if i say i am in pain its not a small pain, its serious. I tried to hold it all together, but Pete was loosing the plot a bit as he could see how much i was struggling and they refused a CT scan on the grounds they didn't think one was needed, by Monday afternoon i was in tears the pain was horrific, i saw all sort of doctors but not a respiratory one or a Cardio one. 

By the evening I was in a distressed state and my husband said they have to act, as I was worsening and getting weaker, they sent me home again very late Monday night to return for an ultra sound scan on the Tuesday morning, I was surrounded by a team of consultants, I kept repeating to all medical staff that I cant breath it hurts and I described the feeling inside as a death rattle. The ultra sound lady said nothing wrong with me I asked why I can breath and she didn’t know. I then pleaded with a junior doctor to listen to my chest, she said quizzically sounds like a plural rub, I explained it was getting worse and asked well pleaded  her to help me, you would think i was in a third world country. I couldn't breath for goodness sake, this wasn't going to end well!

To cut a very long story short, I collapsed in style in the hospital which made everyone start running around and taking notice, I was rushed down for a CT dye scan and was found to be multiple pulmonary embolisms on both lungs and i was lucky to be here at all at that stage.

I was given various treatments and injections and given a piece of paper saying 1 in 4 PE's are fatal and that more may occur quickly and the next one I might not be so lucky… my head was in a spin, what is happening to me, what was going on. I couldn't take it all in. It was this day that changed my life forever as I know it. Nothing from this point was ever going to be the same. That night was horrendous I didn’t sleep I was terrified, my husband stayed until late and I stayed up all night worried if I would see my children in the morning, and trying to think what Pete needs to know… all i could think of is that he didn't even know Steve has pineapple in his pack lunch!!!! I mean what is all that about… not the more useful info like where the bank passwords are etc etc….

The reason the medical staff missed this initially was because its not high on their minds to think of a PE in a fit healthy person that hasn't been hospitalised with an operation, I never sit still, I hadn't been on a long flight. SO none of the tick boxes were ticked, I didn't fit any form. It happened for no reason. Although I have been reading that if you have AF which I was I also have, but they failed to diagnose it until later, this can cause the blood to pool in the heart and therefore can create clots which can result in PE if not on blood thinners, so unconfirmed  in my case and I haven't got the fight in me to prove it!

So now it is a slow process of recovery which I am still in, everyone in the medical profession tells me how lucky I am, I know this, I struggled with the process of getting diagnosed, and the lack of medical support from there onwards. I am a professional and I thought I would be able to speak out for myself, I was obviously too poorly to do this. I spent the following months and still have to visiting private respiratory and NHS cardiology and NHS/private neurology, haematology to try to understand what has happened and how I can recover and to what extent. And what the implications are long term.

My PE was unprovoked, we will never know why for sure, I struggle with this also. For the first few months I suffered severely with PTSD and still have this to some extent with anxiety and thought I had had a stroke or gone mad, my comprehension was non-existent, I can't read more than a paragraph at a time and I certainly can't retain what I had read or written. I am a director of an Architectural practice so I am unable to work to full capacity, everything I do takes longer as I can't think. It is a worrying time for Pete , Laura and Steve. After establishing through the private referral I hadn’t had a stroke, I began to improve and end of March this year I tried a small holiday. This ended with a major bleed and an emergency blood transfusion on the way back in Basingstoke hospital, when I started to go into organ failure; I now have new tablets after an 12 week every day visit to my doctors for injections. I am now beginning my recovery again. 

Some days are good and I fool everyone with my smile and short conversations and avoid situations I will not be able to cope with. Pete is quite good at side lining things for me and anything with stress attached to it seems to put me back a long way physically, I can't think coherently under pressure so this doesn't help. The body and mind is a powerful thing!

I think the reason to put this down at this stage is that it has been a year and every minute of every day I have gone over what happened I can remember every little detail and question it, seems bazaar that your life could change in a heartbeat, literally a heart beat! So I am dumping this out of my head as its taking up room!! Room I need for better things!

I am doing fairly well after a rough week training for the Henley 10k had a no show twice last week in the gym and swimming after a collapse (new word) kind of week which happens... but back on it this week and hope everyday I achieve a little something more. I just need to get really good at managing it,  so I can get the most out of every day! 

 

ACCEPTANCE AND THROMBOSIS UK

After a rough week or so I have finally got my head around not being able to attempt the walking London Marathon. Your head is a powerful tool, you just need to train it to take on the right battles!. I have never had to accept that I can't do something before I have even tried!… That was probably the hardest thing to come to terms with. I am not able to attempt this due to my medical issues, It won't and can't happen. HARD PILL that one!

So stop harping on about it as it will just be destructive for my head and recovery. I continue with the gym training to enable me to complete the 10k next year in Henley, walking of course. We have our first month meeting on Monday with the gym instructor to make sure my body is reacting ok and ok to continue as we are. We have done some small training walks with stops for a cuppa and we have a year to get to a point of being able to pull this off.

I have set up a fundraising - awareness page now and if you wish to read a bit of our story please copy and paste the link below into your browser, you can donate here if you wish.

http://uk.virginmoneygiving.com/purldesign

My health issues are now left complex but this gives and overview of the need to raise awareness of thrombosis and blood clots and the fact they can and do happen to anyone, any age, any gender, and fitness, young and old and everyone in between. If I can get one person to recognise the symptoms of a blood clot, then this bare all blog will have been worth it. I do think some days I don't like being so exposed, as usually very private and fooling people with a grin! but if this helps someone in some way then it will be worth it. I am unable to stand up and fight at present as the words elude me and I can't think, but maybe this will come, and when it does I will be on that pedestal speaking out!!!

So onwards and upwards!

HOUSTON - WE HAVE A PROBLEM!

Well where do I start! Head in the right place, body not playing ball!… I gave the sign off document to the doctor and after a telephone conversation and a few more meetings after that, I cannot get them to sign the "OK" document to enable me to take part in the London walking marathon. I questioned them and went over and over, what if I do? what about? how about this? every option put to them was a definite NO. I really thought they would sign it. 

So after long talks, its not going to happen as my chance of completing it are slim, my chances of being ok after are even slimmer. It is too high risk with my heart and post PE. They said with my current health looking at best of staying as good as is currently (which isn't too dandy!), as I cant be fixed or get better, my hope is to retain this level for as long as possible… its a bit of a bummer really.

I have always been and the military just reinforced it ,that you can do anything if you try hard enough, and if you are alive then it is still possible! BUT I need to understand that its not me who isn't trying its my body that physically can't… I am struggling with this process! … but its high risk for me to push my body, I didn't realise or accept how bad things were until they spelt it out really and told me in no uncertain terms the reality of what may and is likely to happen… really odd as I feel sort of able! (But that's the problem, people ask me to just do this or that - my head thinks I can, but it could and does sometimes wipe me out for long periods and I need to be careful as could be worse) 

So after the talking to, I didn't take any notice obviously being me !!, I had to figure and process this devastating info, so I did a non stop training walk at average walking Marathon pace for 5.6 miles non stop (i do more than this but i stop lots of times and take all day) however I was really ill Saturday night which ran into Sunday and frightened myself ...  I now understand that 26.2 miles isn't on my agenda, not now not ever... if I want to celebrate more things in life with the children (who are now adults!)!! SO back to the drawing board and have unhappily pulled out of the Marathon…. 

BUT I have found a 10k walking challenge in Henley along the river which is flat 9th Sept 2017 and I have entered this one with Pete, we will continue to go swimming and the gym (gently) and train for this and my future health and will set up a fundraising page for thrombosis UK … at least I have a goal and it shouldn't kill me which is a plus of course.

So another mental hurdle of acceptance and moving on to learn. And avoidance of the "you should be doing this" people who don't understand the complexity of the issues I need to navigate! So I need to concentrate of living my own life in the best way I can and tick off all the things I can along the way. My Henley will be my marathon!

HARD DAY

Had a hard, very early start day with an appointment for my knee at the hospital 8.40 left at 7.30am, then had to muster enough "I want to go to the gym" vibes….which was very VERY difficult, really didn't want to go, really didn't want to do it! Thought when i got there it would be fine but went throughout he motions and completed the task (and the task seemed like climbing Mount Everest (never done that tho!lol)) thinking I would feel better that I actually did it… but if I'm honest I thought…crickey, that was harder than i thought and really don't feel full of beans now Ive done it! So today done but not the most positive committed day Ive ever had ha ha… I rather get up and get it over with then to work!… SO nothing to report really except I have handed in my document for the doctor to sign to say I can attempt this challenge, I have been turned down previously but i am hoping as i am 11 months on from the initial and 6 months on the second serious situation that she will sign it for me to be a confirmed entrant. We will see!! She may sign with a caveat! I don't care so long as she signs it this time :) Here's to tomorrow!

HAPPY DAYS! LEGS WORK!

Just had to share this!!!Apologies!...Oh it's such a fab feeling that I can actually bend to sit on the loo the day after the gym! Ok too much information but I was dreading the day after if it was going to be like last week, it still hurts don't get me wrong but a sort of achievable hurt!

I often wander what makes people do what they do especially the ones on my top admiration list! Achieving against the odds... strong focused people I have way up high on a pedestal!

On a very much smaller scale with me I can't help think "but what if I can!" I never think what if I can't ...,not ever... I think it comes from my military training you survive no matter what attitude, sometimes this can work against you though... Pete and I have to be split up in the gym as we are both competitive, only it's my mind that's engaged not my body, so I think I can beat him but as soon as I go for broke my body shuts down and I end up on the floor which can be very dangerous , so I constantly battle to hold back .. but since I can't see his readings on the machines now and we don't compare (only the pain lol) it's working a bit better! As I end up collapsed on the floor often enough without that! I am able to suss that a bit and more rarely now it happens in public .. I am usually at home as I know in the morning generally if it's a going to be a hard day and tend to keep a low profile... I would rather people think I am fine fit and happy than a walking disaster! It's a case of managing all the health issues to remain as healthy and fit as possible for as long as possible. This last year changed my life in a heart beat quite literally and my world will never be the same .. but I have to embrace it and make it work. You find yourself giving yourself a  stern talking to quite often to snap you out of a negative unproductive space. But gradually as you understand the mind you can start to change and manipulate it into a better space to achieve and not be held back by negative thoughts .. life is short I am lucky to be here -TWICE!.. and today is good. 

I think the thing that makes you stronger is never be afraid of failing, be afraid of not trying! , you don't know what you can achieve until you put everything on the line and commit in whatever you do in life not just health, fitness etc everything .. Steves girlfriend sometimes looks at me like I've landed from mars as my glass is always half full and I am always excited at the thought of another adventure or chapter or goal.. I think she is getting the hang of our madness now and hesitantly I say, quite likes it... or maybe I'm deluded (-it's possible!) I always say to Laura and Steve they can achieve anything in life, just got to put their mind to it... anything is possible. 

Don't think I don't have really really bad dark, frustrating  days, but I am learning to deal with them and try not let them take hold or take up room in my life, but its no  picnic sometimes!

FLYING SOLO!

Our first session without Chris the gym chap on our backs correcting us, so we have a chart! A sort of star chart ha ha. It reminds us what we should be doing and how! Both Pete and I completed our task although I would have easily not gone today, my legs have hurt like you wouldn't believe after Monday and I never thought I would walk normal again! and my heart has been playing up and not sleeping at all... So it would have been easy to bail! I didn't, I attended and was glad I did as when I warmed up the pain subsided and I was able to do the training. We will have to introduce walks soon also, I am not sure how its all going to go at present and work is busy, but we have started so we must see where it goes and if it is possible to walk the london marathon in september!… I have yet to have my GPs consent, but I am hopeful this time he will sign. Although I don't really want to go to the gym, when I have been (if pete didn't go i certainly wouldn't bother! any excuse!) hard things are best overcome, we all have these words of wisdom in our heads, we all know whats best and whats best for other people, but its only when you yourself actually overcome obstacles big or small that you value and appreciate the impact and the gravity of what you have just achieved….


The worst ones are the ones that are trying to help but in fact fill you with self doubt and feeling of failure and an inability to be happy at what you can do… for example I had one person the other day, she said "oh so and so is a lot worse off than you, bed ridden she is" I could feel my anger inside and then guilt for feeling anger all at once…. BUT ITS NOT YOU IS IT… you are not going through the mental and physical issues so let me acknowledge and celebrate and be happy that a small step has been taken. I am sure her so and so friend would feel the same, her goals and targets are different and great achievements whatever they are.. and unless you have walked in the shoes you are judging probably best to just encourage or keep quiet, people don't want pity, thats no use at all, they want positive help to achieve their goals whatever they may be, well thats my take on it in my situation …everyone is very much different in all aspects... There is always someone worse off, its not a competition, its life and we need to live it and sometimes you need to concentrate on the hard issues before you and try to navigate them, whilst helping others along the way in a positive productive and proactive way. Crickey I have got on that horse this morning , swallowed a dictionary, but I thought as this is a warts and all I am writing an honest account of some of the journey. I wish I started this a year ago when I first fell ill as you forget quickly how you couldn't walk from one end of the kitchen to the other or get up a flight of stairs.