Friday, 31 August 2012

Throw your love around.


Well, this is officially the third day now that I have woken up feeling happy and positive! "Hurrahs", I hear you all cry! I can feel the sadness is there, just beneath the surface, but if I don't stop and think about it then I can't let it escape.

The weather is beautiful today. The sun is out, the sky is blue and the only clouds in the sky are friendly, white, whispy ones. I've got my clean laundry out on the line, the air is beautifully fresh and the birds are singing.

Today me and the boy are going in to town for a little wander. I'm still aching quite a bit but I can't wait! I love going in to town on a Friday afternoon because they have a little vintage market which you can find some beautiful treasures at. I'm also on a dairy-free cheese hunt and I promised the boy I would treat him to a slice of cake!

You might not think it's a massively exciting thing, just nipping in to the local town for a little shop, but it's a huge thing to me - my big day out! I think it's something you really take for granted and it's only when you realise how difficult it can be for someone so immobile that you realise how much it means.

Do you like the picture I used today? I took it at Lowestoft Seafront Air Festival a few months ago. The Red Arrows were doing their incredible display and two of the jets drew this beautiful heart.

Anyway, I must rush off and make myself all prettified for the boy... It's not a quick job!

S.

Thursday, 30 August 2012

The last few days.



I haven't been on here for a few days because, as you can probably tell from my last post, I've been having a bit of a rubbish time.

On Friday my period pain got really bad again so I had to go back on my Nefopam tablets. Unfortunately, after only two doses, I started hallucinating. I was so frightened Friday night that I had to get my dad to come and sit with me because I thought there was someone in my room, someone following me and a massive hand coming to grab me. I've never had hallucinations before and when your head is so clouded and you can't think straight it is truly terrifying. I managed to get a reasonable nights sleep, despite a few incidences of waking up and believing someone was still stood over me.

I felt a little better once my head cleared on Saturday morning, but since the pain was still bad I needed to continue on the tablets. I was completely spaced out and still felt there was someone there but it wasn't as bad and I wasn't as frightened by it. But then I had people with me all day long.

By Sunday though, I was having panic attacks and crying at the thought of being alone in my room. I woke up early and couldn't get back to sleep because I was adamant about there being someone next to me. The boy said he could see how frightened I was - I was absolutely beyond petrified. I had also become extremely paranoid that people were talking about me and that everyone hated me. Including the boy. I thought he would leave me. That he didn't love me. I know he's not going anywhere (please don't leave me!). But I broke down because I thought this was it.

We checked the side effects of Nefopam and it can cause hallucinations but unfortunately, because I only take them for a few days each month (mainly because I don't want my body to get used to them), I'm not giving my body a chance to get past these things. I'm really not looking forward to taking them again next month after all this has happened. Hopefully, it won't be as bad again.

I came off the tablets on Monday and although the pain is still quite bad, I can deal with it. I'm extremely swollen though and my tum is rock hard. Very uncomfortable. My head is clear again now and yesterday and today have been the first days in a long time that I have woken up in a positive mood. I am almost happy!... For now anyway!

My skin has gotten really bad again with acne. I'll do a separate post on it soon but it's really getting me down at the moment. It hasn't been this bad in a few years.

I have started to feel really anxious about my appointment with the Prof. as I realised I will be asking him the same old question: "What are my chances of being able to have children?". Last time I asked was around 2008 and he told me that if everything stayed the same as after my surgery in 2007, that I should be able to conceive. But we both know that things have gotten far worse since then so I am eager to ask the question again. I'm just scared of his response. I don't even know yet what we will be talking about since he said we need to sit down and properly talk through my options - it wasn't something we could just decide on lightly. I still have a month to go before my appointment so I just need to get my head straight and try and maintain this positive feeling and not worry about that at the moment. Either way, whatever he says, I'll at least know more than I do now.

I received a letter from the DWP a few days ago, regarding my benefits. It confused me though because they said they would be paying me the same amount of money on the same basis but after changes have been made to my details recently. I have no idea what changes have been made but I'm happy enough since my money hasn't changed! I'm still waiting on hearing about the next steps though and actually receiving a confirmation that this payment will continue.

My beautiful little niece starts school on Friday. I am so proud of her and can't believe how much she has grown up! It seems like no time at all since I was eagerly awaiting news of her birth, let alone her being 4 years old and heading to school! Since I'm still in scruff mode, I thought I'd share a photo with you from my first day of school! Wasn't I cute!?... It all went so wrong after then! I still love that the little boy next to me (who I won't name and shame publicly!) has already fallen asleep... Jigsaws can be so tiring!

I haven't really done much the last few days. I've been catching up on things since I could barely see or talk (or move or function in any way!) over the weekend. My mama is coming over today to look after me, which I always look forward to. And then me and the boy have a few things planned for over the weekend which I'm looking forward to - as long as I'm able to get around and the weather holds up! (Always looking on the bright side!).

I'm going to try and catch up with my blogging now too. I know I'm behind on some posts so I need to get them sorted but I'm sure you will understand after what has been happening!

If you follow me on Facebook you will notice that I have now started sharing the stories I re-tweet on Twitter. I might do a little round up of these stories on here at the end of each week also because it's all quite interesting reading. I have so may things planned for the blog now... It's just getting around to actually doing them!

And one more thing before I go... I've noticed I've gathered quite a few new followers over the past week or so. Just a big thank you to all of you who are following. I've had some lovely messages (which I will get around to responding to asap!) and I can't describe how good it feels to know my writing is helping others and that people are reading this and I am not alone in it. Please remember to spread the word and also check out the links in the 'endometriosis library' below. Not everyone has the same story when it comes to this disease so it helps to read up as much as possible on everything and I do not want anyone thinking that what has happened with me is what will happen with every woman who has the disease. Everyone is different and people respond to treatments in different ways.

S.

Friday, 24 August 2012

Ugh.

Image courtesy of http://gemma-correll.blogspot.co.uk/
I am feeling so poorly today. I haven't been sleeping properly recently and especially so the last two nights since my period started. I have been in hot flush city since yesterday afternoon and they have been coming constantly every few minutes since then. One minute I'm freezing cold, the next I'm on fire - it's so exhausting (and if you have hot flushes you will know exactly what I mean!). I woke up early this morning and decided to stay up so I could try and take my mind off feeling so bad but it's not worked. I am in pain, feeling intensely sick and in general just want to cry lots and huddle in to a ball. All in all, I want my mama to come and look after me.

The boy came round last night and brought me a big bunch of beautiful Lilies, some Rolo and Milky Bar yoghurty dessert things, crisps and lottery tickets. We didn't win anything but I was already happy enough with the flowers and the boy just being round. I am a girl of simple tastes - give me a packet of crisps and I'm yours!

Just one more thing that I haven't really spoken about... My 'Back to basics' posts. I realised a few weeks ago that at no point have I actually explained what endometriosis is. So in this new series I'll be explaining everything on the subject - from what endometriosis is, to it's symptoms, causes and treatments etc. And I've found that in the process, I'm learning things too. In the meantime though, on the right hand side of the page is a list of links in the endometriosis library which should help anyone who is struggling with the disease or wanting more information on it. It's not always the same for everyone so reading as many different stories and experiences is a really good idea. If you have an endometriosis blog or know of a helpful website that I haven't linked, let me know.

I am going to spend today feeling sorry for myself now.

I'll probably speak to you again before the weekend is through, but if not, have a good weekend everyone... Has anyone got anything nice planned? It's a bank holiday over here in the UK - a whole 3 days off work (for those working obviously). (Hurrahs).

S.

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.

Tuesday, 21 August 2012

Back to basics: what is endometriosis?


Endometriosis (pronounced end-oh-mee-tree-oh-sis) is a painful, chronic and sometimes debilitating gynaecological disease which affects millions of women worldwide.

It occurs when tissue similar to that which lines the uterus (called endometrium) is found growing outside of the womb, usually in the pelvis (although it can be found anywhere in the body), and develops in to growths or lesions.

Endometriosis is most commonly found on or around

  • ovaries
  • fallopian tubes
  • lining of the pelvic cavity
  • ligaments supporting the womb
  • the area between the vagina and rectum
  • vagina
  • vulva
  • bowel
  • bladder
  • existing scars from previous operations
  • intestines
  • pouch of Douglas
  • outer surface of the uterus
  • abdominal cavity
  • uterus
Less commonly (and relatively rarely) it can be found on or around
  • diaphragm
  • lungs
  • kidneys
  • liver
  • nose
  • ears
  • eyes
  • skin
  • spine
  • joints and muscles of the limbs
  • brain
Endometrial tissue can also grow in the muscle layers of the wall of the womb (adenomyosis).

Every month, a woman's body goes through hormonal changes. They naturally release hormones which cause the lining of the womb to increase in preparation for a fertilised egg. If pregnancy does not occur, this lining will break down and bleed. This blood is then released from the body as a menstrual bleed - or a 'period'.

Endometriosis cells react in the same way - except these cells are located outside of the womb. During a woman's monthly cycle, hormones stimulate the endometriosis, causing it to grow, then break down and bleed. This internal bleeding, unlike a period, has no way of leaving the body and results in a build up of inflammation and scarring.

The inflammation can cause various organs such as the bowl or bladder and other pelvic organs to become matted together in a web of scar tissue (called adhesion's). These can cause chronic pain and may interfere with the normal function of the bowel, bladder, ovaries or fallopian tubes, and can sometimes cause infertility.

Endometrial tissue can also form cysts on the ovaries. Some of these are called 'functional' cysts and may not cause any problems. Another form of cyst, known as 'endometrioma', or 'chocolate' cysts (so called due to their appearance), can cause intense pain and spill their contents inside the pelvic cavity if they rupture, this can then lead to mere adhesion's.


Endometriosis is not an infection.
Endometriosis is not contagious.
Endometriosis is not cancer.

Sunday, 19 August 2012

We're all going on a summer holiday.




































Here are a few snaps from mine and the boy's little break away. We had a wonderful time and came back feeling completely at peace with the world.

I wish we could always be on holiday.

S.

Tuesday, 7 August 2012

Zombieland.


As you can probably tell from my last two posts, I haven't done very much recently since it was my joyous period week last week.

At the beginning of of the week I tore an adhesion in my sleep. I was in so much pain from that and my period that I eventually went to the doctors on the Thursday and she has now given me some Nefopam to add to my already existing list of painkillers (Tramadol, Paracetamol & Naproxin). I started taking it the same day and came off it on Sunday as I just couldn't take the side effects. I spent those 3 days walking around like a complete zombie. I barely ate anything, I felt sick to my eyeballs, I was exhausted but couldn't sleep, my hot flushes were on full throttle and I was so spaced out I could hardly move, let alone think or talk. It was quite amusing in a 'poor me' kind of way - I felt like I was doddering around like Ozzy Osbourne! BUT, as rubbish as they made me feel, they did actually take my additional pain away. I've struggled a bit coming off them but I'm going to keep them purely for when my Tramadol/Paracetamol/Naproxin concoction isn't enough. And also, I really don't want my body to get used to these and not be able to feel the benefits.

I was so emotional and down with everything last week that I burst in to tears while I was talking to the doctor. She asked me me how I was coping with everything and I just couldn't hold it in any longer. She has referred me on for some counselling locally, as I explained that I had wanted to go to the counselling the hospital had offered me but couldn't get there. I haven't heard anything yet (it's only been a few days) but I feel better for just knowing that I will be getting my head sorted soon.

I had a new tattoo done on Saturday. I'd booked it in a while ago and really didn't feel like it on the day but thought it was probably the best time to go, while I was doped up on every painkiller under the sun! I've wanted my birdie done for about 4 years now and I am over the moon with it. It's very sore still but it is looking better by the day. I've found great positivity in this tattoo along with my last. My birdie, or Edgar, as he has now been named (re. Edgar Allan Poe's 'The Raven'), signifies something that I have waited a very long time for. Something that I have desperately wanted. 'Good things come to those who wait' rings so true. And my last tattoo, an E E Cummings quote: "To destroy is always the first step in any creation", is so apt for me and everything that is happening that I almost felt like I needed to get it tattooed there and then to be able to move on in anyway. I'm holding on to this positivity tightly and trying so hard to keep it. Because underneath, millimetres under the surface, I'm desperate to cry out and scream. To curl up and hide away. But clinging to this, is just keeping me from going under.

If you follow me on Twitter, you've probably noticed I've been a bit quiet. Me and the boy have decided to get away for a few days of much needed relaxation. Luckily, my pain seems to be finally dying down a little so we can enjoy some proper time together and not have to worry about our daily lives. Sometimes you just need to take a step back from everything, relax and enjoy each other and that's exactly what our break is about.

S.
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