Thursday, 23 August 2012

Frustration.


I keep thinking that the blog needs a few more photos of moi, but it's pretty difficult to find a good recent photo since my usual attire is men's jogging bottoms, a baggy t-shirt, no make up and bed hair. Sorry to shatter the illusion, but I am not a model. I thought instead I'd share a baby photo with you all. It's pretty cute and, to be fair, not much has changed. I still look like this after a bowl of spaghetti.

The past week has just been frustrating. All of it.

I had been keeping relatively positive until I decided to call the hospital last Wednesday. I wanted to know if they had any news on when my appointment with the Prof. would be, but when I called, his secretary had no notes on me whatsoever since my last appointment with him. She went off to check my notes and got back to me on Thursday to let me know that she'd now booked an appointment for me. So it looks like everything had been filed away and it was only me calling them up and pointing it out that prompted them to do something. But anyway, I finally have an appointment to see the Prof. on Monday 24th September. Finally I might find out what happens next.

My dad spent some time trawling the Internet last week to see if I could see someone privately and came across a website for a Mr. Ashwini Trehan. I had a look at his website and it looks amazing. The praise he has received from women thanking him for changing their lives is very moving. I decided to contact him just to see how much it would cost. His secretary got back to me and told me that it would be £350 just for a consultation and that it sounds as if medical treatment wouldn't be effective so it would therefore be likely that I would be put forward for surgical treatment. Mr. Trehan is a pioneer in the 'total pelvic peritoneal excision' technique and this would reduce the likelihood of future recurrence of endometriosis. Great. Fantastic. So what does this all cost then?... The total cost of a private appointment (first consultation and follow up consultation), along with a fixed hospital cost for a diagnostic laparoscopy is £3,200. The cost of the endometriosis radical excision operation is £9,500.... WHO HAS THIS TYPE OF MONEY!? I would literally give anything to have my life back and be somewhat better again, but I haven't got £12,700! It makes me so sad that someone with money can get better, but someone in my situation, who cannot work due to their illness, has to just sit and wait for the NHS to help them. Even if it takes a ridiculous amount of time.

My next moment of frustration came when I went on Facebook to have a little moan about this and everyone decided to have a pro-NHS argument. It was exactly what I didn't need at that point. I just wanted some sympathy or for someone to say, hey, I've got £12,700 you can have! No such luck.

On top of all that, you may remember I mentioned that my car broke down a few weeks ago. I had taken it in for some work last November and they had pointed out then that the head gasket was on it's way out. So, it's done pretty well I guess to get to July with no problems. Probably because it's hardly been driven (I haven't been able to drive since February due to the pain and the amount of tablets I'm on, but the boy has been taking it out once a week for me) but hey ho. Anyway, it's been in the garage for over a week now. On top of the head gasket issue, the engine now needs to be skimmed. Which means in total it is almost a payment of exactly £1000 that needs to be spent out on it. I knew it would need doing at some point and that now is probably the best time, while I'm not working and not needing it everyday, but £1000!? That's all my savings gone now (bar our house savings which I cannot touch). Which leads on to why I was so frustrated over the next point...

I have been waiting (not so patiently) for my Employment and Support Allowance benefits money to come through. I get £71.00 a week, which is paid in to my account every fortnight. It's not a lot and with having to still pay bills out of this money it doesn't go far - but, it is a huge help. Without it I would be a big, big mess. Unfortunately, since the whole process started in May, I've only had one payment go through without me needing to call the DWP (Department of Work and Pensions) up and point out that they have made a mistake. Take today for instance, I have been relying on the £6.50 in my bank account for the last week and my payment from the DWP should have arrived today. Did it? No, of course not. So I called them up once again and why hadn't it gone in? Because they hadn't recorded my new sick note which I sent in over a week ago. So they have now processed a same day payment and told me it will be in my account by 4pm... And I've just checked and it's in! Hurrah! I am a little richer.

My emotions have literally been all over the place this week. One minute I'm happy, the next I'm so down again I feel like giving up. I'm so sick of everything. I'm sick of people moaning, I'm sick of people not understanding, I'm sick of being stuck in this blummin' room and not being able to get out. I am pretty much housebound and it is driving me insane. I just want my life back!! Why does no one seem to want to help me?

It's so difficult to stay positive when you feel like you have nothing to be positive about. I've thrown myself in to working on the blog this week though and have been quite productive with my time. Writing new stories, thinking of new ideas, and illustrating titles. I've also been working on Photoshop everyday so that I can try and figure that out more. I think I'm getting okay at it now!

One thing to be positive about is my counselling. I have my first session on Wednesday 5th September and I'm actually really excited about it. I just feel that my head is filled with so many problems and thoughts, and negative things, that I can't move on until I start to think about them in a different way. It's not a recent thing, my depression. I'll have to talk about it in a different post so I can go in to detail, but I'm feeling good about getting positive. I'm nervous about it though. I just know I'm going to end up in tears straight away!

I had an almost pain free 24hrs on Tuesday-Wednesday this week and managed to go this whole amount of time without taking any tablets . But then my period started and I spent last night curled up in bed, drugged up again with my hot water bottle and copious amounts of hot tea. Rainman was on TV too so I had a little blub to that and a snuggle with the boy which made me feel a bit better. I had a bad nights sleep with lots of strange dreams though - might be because I'd started back on the tablets - so I'm back to being beyond exhausted again today. I'm not sure why I have been so tired the past week but I've hardly done anything because I have zero energy and I am so tired I can barely keep my eyes open.

My blog must be so depressing for people to come and read but it's just unfortunate that this is my life at the moment. As soon as something exciting happens (or anything happens, exciting or not!), I will be writing about it. So stick with me! I hope to be happier soon. I've hoped to be happier since January but it's not happened yet.

But it's coming... I can feel it... It's just not within my reach just yet.

S.

4 comments:

  1. I'm so sorry you are so frustrated right now, and I have been there before. In fact, I was there exactly right before I found my current (amazing) excision surgeon. I even had the "how the hell does anyone afford that?!?" moment. All I can say is that in the end, things worked out and fell into place for me to have the surgery I needed. I never thought it was going to be possible, but it happened. I'll be crossing my fingers that the same happens for you. Good luck, and try not to lose hope.

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    Replies
    1. I'm so bad at replying to comments! Thank you for your message though. I'm still in the same position now but finally have a date for surgery so I'm trying my hardest to stay positive - it's just so difficult. It's good to hear from women who have gone through the same experiences as myself - and come out the other side. Here's hoping I have your luck! :) xx

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  2. Alice (Leicestershire)21 November 2012 at 10:56

    I have stumbled across your blog and am up to this entry. I also came across Mr Trehan in my Endometriosis travels, and as I am quite into science was amazed and inspired by what he was doing. However I also thought it was still quite pioneering and lining is there for a reason, so thought would it be better to wait until more was known about the long term effects of that surgery. That's not to say it doesn't work - and I think if my symptoms were as bad as yours consistently then I would be considering it more seriously. I think my point is even when things are really bad, extreme solutions can seem too good to be true - and I would just say be careful, do your research (which I am sure you have) because pioneering this like this can be just that, too good to be true and it would be awful if this was the case after wishing for it and having it done. I am rambling but so little is known about the condition I think that any action has to be well considered.

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  3. I went to visit him recently for his consultation, it seems his prices have inflated. I was told surgery would cost £25,000!!

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