Out Of My Tree
I’m not ‘boring’. I’m English.
I’m not ‘boring’. I’m English.
Jul 20th
I know, it’s a bit of a cheat but I have posted, but not here. I am currently blogging by proxyish at Not Just a Patient (my fiancé’s blog about his heart op).
Today’s post can be found here
And with that I say have not slept for over 24 hours and must nap now becasue I have to be up in 5 and a half hours to call my darling and wish him happy operation day!
Love to you all.
May 27th
I should be sleeping.
In 4 and a half hours Neil and I leave for the hospital. No. It’s not his heart operation it’s “only” the camera test to find out what they will be doing in his heart operation but… Sigh.
They will be knocking him out. We saw the anaesthesiologist on Tuesday and we were assured everything will be find. The staff at the Lancashire Cardiac Centre in Blackpool are second to none and every time we go there we are made more and more confident. Everyone from the surgeons to the receptionists are competent and warm and helpful in a way I haven’t seen in a medical facility in a long long time.
Last time Neil had this done I didn’t know him. It was in a different hospital and was many years ago but still…
Last time Neil had this find he was, again, under general anaesthetic and they ripped his oesophagus and didn’t notice. Granted it was only a small tear but after s couple of days at home I think the phrase he uses in “fountain of blood” and then rushed back into hospital.
Now I KNOW everything is going to be okay this time and I know that what happened last time in a rare event (the shocked look on the doctor’s, and nurse’s, face when we told them revealed just how rare) and I know I am panicking over nothing but this is my Neil, my whole world, my reason for being.
I actually going myself praying a few minutes ago. I was down on my knees hoping that something was paying attention.
Christ. If I’m like this now what the he’ll am I going to be like when the operation comes?
May 16th
There is a new blog out there. My dear fiancé has started a blog to talk about his forthcoming heart operation and how he copes with his Marfan’s. Awesomeness is now called Not Just a Patient. Please show him some support. Pretty please.
From me today all you are getting is this memr which I stole from Karl at Secondhand Tryptophan as I have nothing to post about at the moment.

May 10th
I went to the doctor today.
Nothing big happened but that is kind of the point. I am in the middle of my Hb1Ac and there is nothing the doctors can do for my Diabetes at the moment, I thought I had a solution for my stomach pains. When I was going through the diagnosis I didn’t know I was Diabetic but now… well, I thought there was a possibility that if I came with my symptoms + Daibetic then the Doctor would have a Eureka moment.
Nope.
I wanted a referral for the PCOS clinic because, well, Neil and I want children at some point. with my ovaries riddled with cysts and me not following the usual cycle that women all around the world follow, I need to be proactive.I am 33 years old and I…
There was some kind of baby clinic on at the surgery and I was so broody. My heart ached.
I also went because my mood swings are wildly out of control. I fly from extreme rage to crying my eyes out to obsessively happy and almost frantic. I am really worried about my head. Mess? Me? Sigh.
I know that everything is getting on top of me and this is probably all just stress but things aren’t supposed to be this hard are they?
And I can’t even afford my blood pressure medication.
It has taken about an hour and a half to write this little post and I have just realised that I haven’t done any of the things I was supposed to have done tonight.
I just want to write! I just want to create. I just want to be me with Neil and the dog.
I’m planning to go to a wedding fayre on Sunday – well, probably, if I can be not tired for just two minutes.
Wow, I am such a whinger – somebody give me a kick up the arse! Please!
May 6th
Yes, I am rubbish. I think about blogging, I open the blog, I click Add New Post and my mind goes blank. Rather like now. But the rather awesome Karl at Secondhand Tryptophan started blogging again after a break and after reading said post I got a small spark of the blogging joy again. Of course, now I have to come up with something to write and that is the hard bit. Let’s see… Since my last post I have… er… Well, there was the… And then the… Nope.
I got older. Yes, there’s one thing. Phew! I am now 33 years old.
I finished Script Frenzy and have now got more ideas than I know what to do with which is just as well because I am going to need something to distract me
We don’t have an appointment for Neil’s camera test yet, so still no date for his operation… I am the embodiment of a zen like calm. Honest.
Yesterday I voted in the AV Referendum and in my local elections. All around I can say that I felt pointless as neither the AV campaign or the local candidates did enough to convince me of anything. The local candidates have been getting quite a lot of my ire on Twitter because they never bothered to campaign at all. No leaflets, no meetings, no interviews in the local press, no canvassing, no posters, no websites, no Facebook pages, no tweets, nothing. Not even entirely sure they actually exist! But, well, at least I know for certain that nothing will change. Councillor Peter Pringle (who won) is a LibDem in a (now) Labour run council. Ignored he shall be if he bothers to try to do anything. And the Labour Council will just spend the next few years doing nothing and throwing their hands in the air squealing, “We can’t do anything because of all of the cuts!” while they conveniently forget that it is their party’s fault that we have all these problems now!
And relax…
Sorry.
Political rant over.
The Royal Wedding! Yes! I LOVED the dress and the whole caboodle. Trees in the Abbey? Oh, I loved that. Neil and I had an indoor barbecue in celebration and he pretending not to see when I got all weepy over the vows. Total mess.
What else?
I went to a DESMOND Project training session. DESMOND is well Diabetes Education and Self Management for Ongoing and Diagnosed – it was informative, interesting and more than a little annoying. But I learned one thing. I can eat anything I want so long as I have it in moderation. Yep. That was it. And you can have a treat a week. And diet soda is fine. Oh, and depression is just feeling ‘a bit low’. I am really hoping that there is another one so I can learn even more.
The 2nd Kirkham (St. Michael’s) Scout (click here to support them through easyfundraising – register and shop) AGM also happened last month. It was the usual level of crazy and I have 11 months off before it all starts again. I am still in awe of the leaders and helpers that continue to give up their time to make sure the girls and boys have a great time!
I’m sure there was other stuff but I really can’t remember. It’s been a month of little tiny things and great big things but mostly I have just been waiting for something to happen so we can move forwards.
Mar 27th
Okay so here’s what is going on.
Eleven days ago Neil and I went to his yearly heart check-up.
Neil has Marfan’s Syndrome which is a rare genetic disorder that affects the connective tissue. It effects about 5,000 people in the U.K. That’s the dry version. The reality is that he is partially sighted and has joint problems and…
At the heart check-up Neil had an Echo and an ECG and X-Rays and then at the end of a very long day a chat with a lovely surgeon who said the first of a lot of very scary words.
Sometime in the next few months Neil will be going in for a heart operation. His aortic valve needs repairing or replacing and his Mitral Valve might need repairing or replacing too.
He is okay. It’s not his first heart operation. I didn’t even know him during the first one which was seven years ago during which his Aortic Valve was repaired. So he’s all fine about it and is more worried about everyone else which is so typical of him.
I am terrified but positive which I think is the healthiest reaction I can have. There will be a week in hospital followed by six weeks of recovery during which I am going to have to try to make “the world’s most difficult patient” (how he describes himself) follow the rules and be healthier. I am scared and have, therefore, become a horrendous bitch – watching everything he does and listening to his heart and breathing and driving him insane.
On Wednesday we have the first of many tests – this one is a Breathing Capability test which is the least stressful. At some point soon Neil will have a T.O.E. – a camera test – which he will be having under General Anaesthetic. It will be fine. Of course it will be.
It has to be.
So, basically, I am sorry for being a bit short and a bit distracted. I will be fine… and I will stop being selfish talking about my own feelings and will just go and see if Neil needs anything.
Feb 13th
So, I had the eye exam and I can tell you that they lied. Sting? Sting?! Fraking killed! My eyes felt like they were having acid poured in them but of course I am too bloody polite to say anything. I just let it go and moved back to the waiting room to wait for my pupils to dilate or whatever. Neil was great – he is partially sighted and has been through the eye test I was having a number of times. I was waiting fr my eyes to flip out but other than a weird doubling of everything and… you know when you have bee crying ad you still have tears in the corner of our eyes – the wet window thing? Yeah, like that.
The nurse was lovely and had no problem with Neil coming with me into the room while she did a standard eye test with me (I really need to go to opticians and get some new glasses but things were basically fine with that); and the photographer was very good at explaining what she was doing and why. They tied it in to the whole care I will be getting and emphasised a number of times that I must go to all my appointments. Then it was time to leave after they advised me that I will get a letter through the post some time in the next two weeks with my results and that my eyes would be back to normal in 2-6 hours. Then came the leaving.
When we went in it was perfect eye test weather. – dull, cloudy, potential for rain, lovely. Great, thought I, I will will not need to wear sunglasses which ALWAYS make me look stupid – I will be fine. So, of course, the sun got his bloody hat on hip hip hip hooray and the sunglasses went on. That wasn’t enough though. So, eyes closed, hand tightly on Neil’s arm and feeling rubbish.
I am the worst blind person ever.
I trust Neil with my heart, soul and life and he knows it but, holy God, am I ever surprised he didn’t push me into traffic. I think he may have lost circulation in his arm I was holding on so tight and the amount of times I asked ‘are you sure?’ – mental case. Looooonnnnngggg story short though he got me home and I went to bed hiding away from the bad light… and I slept to avoid the headache that was taking over the greater part of my brain. Yay!
Neil has a regular meet-up with his friends every Tuesday and there was no way I was letting him miss that so I sent him out by vaguely opening one eye in the darkened room insisting I would be fine. No, I didn’t want anything. Yes, I would call if there was a problem. Back to sleep went I.
A couple of hours later I woke to the call of nature and answered with my eyes bleary from sleep I looked in the mirror and was surprised to see that my eyes were still spacey and things were still doubled and wet window-y. Then it all went a little wrong. I couldn’t find my glasses. I needed a little control back and imbued my glasses with the magical powers of sorting my eyes out and they weren’t where they should be. Called Neil and heard ringing in the flat. Yes, his mobile was still attached to the charger where he had apparently left it so, of course, I called my mum who lives 7 miles away and cried down the phone that my glasses had wandered off. I don’t know what I was expecting her to do – use remote viewing to find them?
My mum is awesome in a stupid crisis like this one. She pulls me down off the ledge and wallops some logic back in there. Two suggestions was all it took before the specs were back on my nose -made me think I should check for cameras. Yes, my eyes were still blurry but I was then more concerned with the lingering headache and the feeling sick. It was becoming awesome. More sleep and cuddles from the returned Neil cured that though.
Fast forward through a bad stomach pains and headache and feeling sick Wednesday to Thursday. The post arrived and in it was a letter from the Diabetic Retinal Clinic – any medical letter comes that quick and panic tends to set in. If it’s fast news; it’s bad news – right? I opened it with more than a little trepidation – I was going blind. Glaucoma was marching across my eye balls bring with it a cavalry of cataracts and Diabetic Retinopathy (whatever the hell that is) – how was I going to cope? I had images of darkness and – yes, I went down the rabbit hole fast.
Wow, I am rambling a lot today.
“Your eyes are fine… well screwed because you haven’t been to the opticians in bloody ages but Diabetes wise they’ll do” is exactly what the letter said.
True story.
So, now I’m on to the next bit. Tomorrow I see the Diabetic Specialist Nurse who, I have been lead to believe, will sort everything out and tell me how to kick this all in the nuts.. and the I will become healthy and full of energy and able to take over the world!
But right now, I am going back to bed for a while because I feel tired and old and am still getting over the horror of nearly fainting on my mum yesterday while shopping (throwing up in nearly every loo in Preston followed by the inability to use my legs followed by the world going away and nearly knocking my mum over does not a happy Bec make).
No, wait, have to go bake something to encourage Neil (who has finally succumbed to the bug that is going round) to eat.
Feb 8th
Okay so I am going to admit something about myself. I don’t like people touching my eyes, or going near my eyes or going near anyone else’s eyes. When I see people putting in contact lenses on TV it wigs me out. I had to help Neil move a contact across his eye a few weeks ago, I did it because it was Neil and he was in pain, but eeeeuuuggghhhhhheeeeewwwwwwww bleurgh…
I’m telling you this because later on today I am having a Diabetic Retinal Eye Scan which means EYE DROPS which one of the Diabetic websites says will STING which is making me a little nervous. My eys will be covered in fluid which will then make my pupils larger – oh God, I’ll have to wear sunglasses (which I really realy don’t suit. Wow, I must be anxious, I am caring bout what I am going to look like!
Mmmm… need to wash my hair.
Feb 6th
So the last two days have been great. No seriously. I have been having fun with Neil and reading loads and…
What the hell is wrong with me? I should be having feelings of sunshine and rainbows but instead I am awake at crappy o’clock on a Sunday when I should be curled up with my lovely man. I can’t sleep and I feel all heavy headed just like I have been crying.
I burst into huge tears last night. My stomach pain was rather massive and I felt all kinds of rubbish and then I started crying. Big tears. I’m not sure where it came from but tears… and really needing hugs (which I got) I have been holding onto all this crap for months – the disappointment of leaving my job, the feeling tired all the time, the pain and the nausea, the not knowing what is wrong with me and the constant feeling of not being cared for by the professionals who were supposed to fix me, the guilt as I watched my love run around after me making himself tired and do everything for me.
What am I doing to him? This isn’t what he signed up for. And that’s what I… wailed at him last night, and he… the annoyingly perfect man that he is held me and told me he loved me and that I was what he signed up for. Damn him. Damn him. I love him so much. I really never knew that I was capable of this feeling and it is so strong, so very strong. I want for nothing when I have his arms around me. I need for nothing when I feel him near me.
I wish I could sleep. I want to sleep with him. I need to feel his arms around me but by the time I feel tired he will be awake and the cycle will start again.
Damn. There the tears are again.