Facing my Deamons, Using a wheelchair.

Last weekend I faced some of my deamons.

My recovery is slow this time round, after the battering my body had taken this year, but I am getting there. Baby steps and all that jazz. Not that I feel jazzy at the moment but hey ho!

Last weekend I decided to do something we’ve had in the diary for months, have a “normal” weekend away with my partner and his family. It was as normal as possible excluding the fact that I took and used a wheelchair for the weekend, something that I had to accept was for the best.

I have Vloged about it, so click the link to find out how I got on….

https://youtu.be/B4t7hppTU8k

That is hard

I’m back in the hospital. Third time this year and that is hard.

Coughing up more blood , panic and fear cursing through me, that is hard.

Coughing up quite a lot of blood, trying not to panic and seeing the fear in my partners eyes, that is hard.

My partner not being able to coming in the helicopter with me, that is hard.

Coughing up every few hours with quite a lot of blood, leaving my body exhausted, that is hard.

Daily blood draws to check all my other organs are ok, that is hard.

Stopping blood thinners and the fear of another stroke, that is hard.

Not knowing how this is going to pan out, that is the hardest.

Somewhere over the Rainbow.

There is nothing more beautiful than a rainbow. I believe it is the way our loved ones who have passed away try to connect with us to tell us everything I going to be alright.

My darling Pupa suffered from severe dementia in the last ten years or so of his life. It was so sad to watch this strong, happy man become a frail shell who didn’t even know who he was. He became a shuffler, and had to go and live in a nursing home in the latter few months of his life.

This broke my Nans heart as she had cared for him for so long and felt she should take care of him until the end. She is a very proud woman and finds it hard to accept or even ask for help.

On the car journey to the home, he was sitting in the back with my Nan and gently singing “somewhere over the rainbow,” the song that was chosen to play at his funeral only five short months later.

The day of the funeral, we were all waiting outside the crematorium and a massive rainbow appeared in the sky. We all knew he was no longer suffering and he was telling us everything was going to be just fine.

I loved him so much, he was one of the kindest men you will ever meet. He put his family first and would give you the shirt off his back. We all miss him terribly. Every time I see a rainbow I know he’s there, looking out for us like he always done. X

What Would You Do? – Disabled Parking

 

Last month my sister and brother in law visited which was fantastic. It was their first trip to the island and only had one night with us. They took me out for lunch, and we were accosted in the car park of the hotel for parking in the disabled bay. I have done a whole video on my YouTube channel about the experience, I will link it below. I would like to say how overwhelmed with the kind support I got from people after doing this video and also how angry I am at the amount of people who have also been treated like this or worse for having a hidden disability.

But, it got me thinking. What would you do

A) If you were with me in my car?

B) If you seen this happen to someone else?

My sisters reaction was to come to me and see that I was OK, my brother in laws reaction was to confront the man and tell him HE was in the wrong and the lady in the car next to me decided to make a snide comment even thought it had nothing to do with her!

So what would you do in this situation? Here is the link to my video

 

You can either leave a comment here or  in the comments box over on Youtube. Thanks guys.

 

I’m back vlogging!

I have a little YouTube channel where I planned to Vlog to the masses about my life, but, well as you all know my life has been all sorts of crazy lately and my channel has suffered. But, now I am back on track and I’m starting to get things moving again.

If you want a look,  click Here

If you like it, please feel free to subscribe and follow me over there too. My aim is to run here and there hand in hand. Thank you.x

 

 

 

It never rains…

Well this year is turning out to be eventful!

Two weeks ago I woke with a rubber arm, it wasn’t doing what I told it to do and it felt numb. Thinking I had slept on it funny I went for a shower but when I couldn’t grip the shower gel I knew something was going on.

My partner took me to the little cottage hospital on the island and after a few initial tests the helicopter was called and I was choppered off to the main land.

A CT and MRI scan later showed I had suffered two strokes, probably due to being taken off my blood thinners a few months back. Oh Man!

Thankfully my arm is back to working order and I’m only left with a few things like dodgey handwriting, but they are hopeful for a full recovery.

What it also means is a lot of blood testing to keep my INR in tight range which is a pain but I am glad we can do it with the coagucheck machine which only involves a small pin prick on my finger.

Poor Reeva thought I had abandoned her again and has not left my side since I got home.

A stroke can be devastating and I am so lucky that we acted quickly and I’m on the way to a near full recovery.  The acronym FAST was designed to help detect strokes and get help quickly, so please look out for these signs:

Face drooping to one side?

Arms, weakness, tingling, unable to lift arms up.

Speach, is it slurred, not making sense or unable to get words out?

Time, if you notice any of these signs please call an ambulance straight away.

 

Amongst the chaos

** Please read my previous post first **

With everything that has been going on in our lives, you would think I would not need any more drama. But with this years impecable timing, life had one more ingredient to add to the mix.

Lets rewind a few months. Before we got offered our new life and I ended up poorly, we decided to get my dog spayed. She then came into season so we decided to give her one chance, if she got pregnant great if not, no big deal and she would still get the op.

She got to spend a whole morning with our male cocker spaniel Borris, we gave them their privacy. Reeva was warned there probably would be no flowers and candles and Borris was warned to be nice.

That was that, we would know in a few weeks if the deed had happened, life went on as usual.

Then the job offer came, then I ended up in hospital and Reeva started with morning sickness! Borris had it in him all along.

Fast forward, the week of the birth. Reeva was 4 days late. I was getting blamed for mixing my dates up, but I knew when the deed was done. We took her for a scan that confirmed all was well, go home and wait……

We waited all weekend and on Sunday morning she started showing signs of labour. 3 hours later, nothing was happening so we called the vet who said to wait it out a few more hours. At lunch time, still nothing and we took her in. The vet gave her an injection to “move things on” it never worked. So it was an emergency Caesarian. She had three puppies but one was still born. She was amazing, took to motherhood like a duck to water.

The pups are now almost ready to go to their forever homes and we are ready to get back to some kind of normal.

 

 

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It’s been a while.

I can’t believe I have neglected this for so long! Well actually I can when taking into account what’s been going on in my life…

My partner was offered a new job at the beginning of the year which meant us moving to an Island. Very exciting but also extremely daunting. We took the offer and started the ball rolling for the big move.

Three weeks before the move, as I was showing the removal men what we were taking, I took a bleed on my lung and ended up in the local hospital. I wasn’t too worried as this had happened before, so I thought no problem, I’ll be out in a few days. The Drs wanted 24 hours no coughing up blood….. 6 days in and two quite major cough ups this wasn’t looking likely, but day 7 would mark 24 hours. I woke up that morning and was full of happiness that I would be getting out and able to get home and get on with the packing. The BOOM…. I had quite a big cough up, the Drs went into panic mode, blood was drawn for cross match at the blood bank and phone calls and emails started.

It was decided I be transferred to the specialist hospital in case I needed surgery to stop it, and being a local hospital they didn’t have the facilities or expertise. This was not in my plan. The move was in 3 weeks and there was so much to do, but I just had to put my faith in my partner and the Drs.

4.5 hours later after an uncomfortable journey strapped in the back of the ambulance I arrived at the hospital. I was put on the ward and the plan was bed rest, wait and watch and see if it stops

So there was nothing I could do. Just wait. Each day there was old blood coming up, they were happy with this. I wasn’t, I was scared and wanting to be better. Day 4 and I woke up having a massive bleed. It felt like I was drowning. I buzzed the nurse and looked up and there were 6 people around the bed, all wanting a vein, to listen in to my chest, to take X-rays and give me medicine.

I was rushed to High Dependency where no one knew what was going to happen. Surgery was last resort as would lead to loss of lung tissue, so they treated me with medicine. My family were called to come in, mum and dad were about to board the plane for their holiday and had to un check their baggage and rush to the hospital.

I spent a further week in HDU and had medication and nebulisers. Thankfully this worked and I was back on the ward for a few days before I got sent home. One month in hospital. My partner packed and made the move on his own, and I joined him after two weeks recovering at my parents.

Its been a rough time on everyone. I am left with pain in my lung from a haematoma. I am a lot more breathless and extremely exhausted. But I’m here. It’s going to be all about adjusting from now on.

So please forgive me for my absence, but I hope to be here for a long while and share with you my new life and all it entails. On an island!!!!

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How it is sometimes

I seen this on Facebook and stole it! Ha ha. But I stole it to tell you all how it is for me and many others living with a chronic illness. Some of them apply all the time, some I feel occasionally. I will try and make it as light hearted (excuse the pun) as possible, but don’t take the humor to mean that each point is not valid or has an impact.

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  1. I always feel guilty…

Well this is quite a statement. To be fair, i do feel guilty for having this thing that I try to ignore but tit follows me around like an annoying child. I want to shout at it to go away but know that back lash will be worse. I have many types of guilt, when I have to let people down last minute because I am ill or cant manage to summon any energy. The guilt that what I have does not just impact me but my family and friends. The guilt that people have to change their plans to accommodate me. What I have learned over the years, is guilt is nil point because I have no control over it and I can not change the circumstance that is causing the guilt, so this one I really try not to dwell on.

2. I feel like I am alone….

Sometimes. But I have an amazing network and have met many other Congenital Heart patients who have become very close friends. I know if I am having a bad day that I can call on these guys and suddenly I don’t feel like the lone ranger any more.

3. I often have anxiety and depression…

Yes and yes. I am working on it. I have a fairly positive outlook on things but there are always those niggles. I think everyone gets anxiety to some level.

4. I am almost always in pain….

This is true and this really sucks. Pain is invisible and until you have suffered then really you have no say on this subject. I suffer chronic pelvis pain but also have pains all over my body. It sucks! So please if someone you know is in pain, have some sympathy.

5. Every Healthy Day is a gift….

Oh YES and I love gifts!! Lately I have not been given many but boy I love a day when i feel good and can get out and on with my life. Surprise gifts are the best.

6. I don’t look sick….

Well on a good day, no I don’t. The only tell tale sign would be the slight blue tinge to my lips. People have asked what shade of lipstick i wear as they like it. Hmmm I don’t think mauve to dark cherry (depending on the day)  is a good lippy colour on anyone!

7. It seems impossible to get out of bed….

When I was younger I would sleep for most of the morning. Now I try and get up but some days snooze gets hit over and over. If I am poorly, I may as well not set an alarm. I am NOT lazy, I just need more sleep that healthy people and that is that!

“I’m great in bed, I can sleep for days.”

8. I am afraid to work, make plans or have a life….

I don’t like making plans too far in advance as I will probably have to change them due to the screaming child. (See number one)

I do work, but part time and I have an amazing boss.

I am not afraid to have a life, we all only have one life and we should not be afraid to live it. If something happens then it happens, but I really try not to let my illness stop me from trying. I am more afraid of not having a life and missing out on things.

9. Exercise doesn’t always help…

We all know that exercise is good for us right. Well unfortunately I cant do the gym or go a run because I would keel over and die.

But I do try and keep my body moving at my pace, but believe me it is by no stretch of anyone’s imagination classed as exercise!

10. Not all Doctors Understand

I am all over this one! Because I have a very complex heart / lung condition nothing in my body comes with in ‘normal’ perimeters. All my blood tests read ‘wrong’ and have all the non understanding Doctors freaking out. My oxygen saturations are 20-25% lower than Joe blogs and have all the medical staff reaching for the o2. It can be frustrating having to tell them that is normal for me, and some of them think I am telling them how to do their jobs. Which I guess I am.

11. I feel useless – Almost daily

I hate not being able to do stuff and having to rely on others. This is an ongoing battle.

 

 

Sitting on the Dock of the Bay

It can be very pretty where I live. Right now the heather is in full bloom swathing the hillsides in a beautiful purple. This is the sign that summer is coming to an end. The tress are thinking about changing colour and a few have already shed some leaves. We are about to enter my favorite season. Autumn, where the nights draw even closer and the chill appears in the air. The countryside will change colour again.

But right now we are only on the cusp. Yesterday was one of those balmy, late summer days, where the air is so still it feels like it is waiting, anticipating something  big. The sky is as heavy as the humid air.

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I went out with my camera, on a very lazy stroll along the Loch side. It was so quiet, all I could hear was the odd little fish jumping for his lunch, leaving ripples on the flat calm water, or the chitter chatter of the ducks while they paddled on banks. It was so tranquil and peaceful.