Monday, 31 March 2014

3 weeks in.







Well, we are now a whole 3 weeks in to our first (and hopefully, only!) round of IVF! The last time I wrote, it was the day before I had my mock transfer. Everything went well with that and it literally only took a matter of minutes... But, boy, did it hurt!! It was done in the theatre but I was fully awake (unfortunately!). I'm glad Danny was there with me, holding my hand, and the nurses were great, reassuring me and passing me tissues when I burst in to tears! I felt really rough after the procedure and spent the rest of the day curled up on the sofa eating chocolate which I thought would help, but by the evening I felt terrible. That soon passed though and on the following Sunday (2 days later) I started with the first lot of drugs.

From the start up until just after my period started, I had to inject 0.5ml Suprecur in to the top of my leg every morning before 9am. This drug shuts everything down but I have also seen that it's a treatment used for endometriosis, which I didn't know beforehand. I felt the effects a few days in and my moods were all over the place - crying one moment, fiercely furious the next. Poor Danny definitely couldn't do anything right that week... Or the week after!! I also noticed my acne got much worse, my hot flushes got much worse and my pain got much worse. And the bruises on my poor leg... Ouucchh!

When my period started, I called the fertility centre and was booked in for a scan and blood test on day 4 of my period - which was last Monday. The scan showed that I had 12 follicles (6 in each ovary - up from 4 in each last time). Something I forgot to mention is that the nurse found a few cysts on my left ovary on the scan just prior to my mock transfer, but on last weeks scan she couldn't see these and they haven't been mentioned since so I'm hoping they've just popped and gone away! With everything looking 'normal', I had my Suprecur dosage reduced to 0.25ml per day and that evening I started my wonderful (!) Menopur injections. I have to mix 4 vials of powder with one vial of water (I haven't checked the actual measurements) and then inject any time between 6pm-11pm each day. The process is really arduous as you have to mix all the vials together by filling the syringe with the water, injecting it in to a bottle of powder, fill the syringe with the mixture again and inject it in to the next powder and so on until all the vials have been mixed and you have a syringe full of fluid. Anyway, I had my first injection last Monday evening while we were getting ready to go out to a concert in Nottingham (my first night out in months and months!). Almost immediately, the pain began. It felt horrible. Like a deep kick on my ovaries. I took a load of painkillers and then we had to leave but I didn't feel great from it still. The next day I was exhausted anyway so I just rested but I still didn't feel very good. I had my second injection in the evening and an hour or so afterwards I began to feel really bad. I had terrible stomach ache, like I had an upset stomach (but I didn't), I felt incredibly sick and completely not with it. I was in the bathroom and felt like I was about to collapse so I just about made it back to the bedroom and fell on the bed in a heap of tears. I couldn't even shout down to Danny for help though he came up to find me after a while and got me in to bed with a cup of tea and some chocolate. I felt completely weak and out of it. It seemed to ease a little the next day, after a very long sleep, and I continued with the injections until I had my next scan on Friday just gone. I told the nurse about my reaction then and it seems like my endometriosis has been reacting very badly to the drugs - but I just have to put up with it because it's either put up or stop the process! 

My scan went well on Friday, though it was very painful as I was so swollen and tender. It showed that I had 9 usable follicles in total - 7 in the left ovary and 2 in the right (the nurse said it's normal to have less on one side) which means the drugs are doing what they should be doing. I had to continue as normal with the drugs and then come back in today for my next scan and blood test. Today's scan showed an even better result. I now have 8 usable follicles in my left ovary and 2 in the right still, although another follicle is there but it's not at the size it should be so it won't be used. My follicles had to be in double digits with regards to the size by now and all of the usable ones are around 10/11/12mm which is perfect. Because of that, we now know everything will be going ahead as planned - another scan and blood test on Wednesday and Friday, then I go in for my egg retrieval on Monday next week. I also had a phone call from the hospital this afternoon saying I'm able to reduce my Menopur dosage to just two powders now so I'm hoping that will help the pain I've been in. 

I've been finding the whole process really difficult, physically and mentally. There is so much involved and there are no points at which you can just take a breath and relax. There is so, so much that could go wrong, at every single step. I'm trying to stay positive and I've even been gathering things for the nursery, but sometimes I feel totally stupid for doing that. There are so many women that IVF doesn't work for - why should it work for me? I don't know. I just want this to be over with and to know the outcome. For both of us. I know I'm not the only one struggling with all of this - even if he doesn't show it like I do.

During this time my mum and my little niece have been in hospital also, which I don't think helped my stress levels at all! Mum was in agony and was rushed in after we called an ambulance for her, but, after 4 days, 3 x-rays, 1 internal scan and countless blood tests, they discharged her as they couldn't find anything wrong. She is still in a lot of pain but all she can do is take pain relief medication and wait for an MRI. Merryn, my niece, was taken in the following week, after coming home from school and having tummy ache and sickness. The hospital thought she had an appendicitis but in the end it turned out she had a virus that mimics an appendicitis and luckily she was discharged the following day... Poor little thing.

I've had a few bridesmaid dress fittings recently as my oldest friend, Hayley, who I've known since 1995 is getting married in May. I cannot wait for the wedding as her and her partner have been engaged for 12 years I think it is now! Sadly, shortly after the first fitting the other month, when we had spent a morning together, her mama collapsed and was taken in to hospital. She was diagnosed with a benign brain tumour though Hayley has since informed me that they think the tumour has grown so they don't know if it may be cancerous. I saw her at the weekend and she has been having fits, blacking out and can't think or walk straight but she is in good spirits. The trouble is, now you would expect the hospital to be pushing everything through quickly to run tests and get it removed, but no! She has an appointment mid April, then another appointment at a different hospital just before the wedding and in the mean time just has to continue with her medication and carry on fitting and collapsing. It's always the case isn't it, that when you need the help from hospitals and doctors the most, they do nothing. I can't believe she is having to wait for so long with something so major! I just pray that she will be OK but it's so, so worrying.

On top of these worries, I had some really bad news regarding my benefits. I had applied for housing benefit in February, since I'm still unable to work, and had assumed I would be granted it because I'm receiving Employment and Support Allowance. But no. Because Danny had a pay rise in January and we are now living together, we are classed as a 'partnership' and therefore, I cannot get any financial help with regards to housing. Because of this, poor Danny is having to pay all the rent on is own and I'm covering the bills which leaves me with around £40 to spare a month. It's been a huge struggle for me as I basically can't even afford to pay halves on food or buy anything else we need for the house. Danny has been great about it all but I feel so guilty that his hard earned money has to pay for me. I just feel so stuck with it all.

My appeal to get me back in to 'support group' status has officially been sent off to the tribunal service now and I received a big pack of supporting evidence to back up the DWP/ATOS' decision the other day. It was quite unbelievable reading through it and seeing their thoughts on my health. The most unbelievable point is where they state that it's 'impossible' for me to have a period that would last 3 weeks because I would have to have blood transfusions if this was the case!! That just goes to show how little they understand this illness. I've bled for 6 months before so how can 3 weeks be an impossibility!!?? Anyway, I won't go in to detail as I can feel my blood boiling already, but now I have to wait around 23 weeks for my appeal date to come through and in the mean time, just put up with them treating me like shit. This is until December 13th anyway, because then, if I've not been moved to the support group, I will lose all financial help and have to wait 6 months before being able to re-apply for ESA. I refuse to give in though. They gave a lot of valid points in their paperwork which I agree with, but it feels like they don't believe a word I'm saying basically because they cannot see 'it' and have no evidence of me bleeding or wetting.... And yes, they have stated that they haven't seen evidence of this... I'm shaking my head right now in utter disbelief. I sometimes think this must all be a massive joke. I'm so stressed out with it all but there isn't a thing I can do but wait and hope I get to put my case across to someone who will actually listen to me.

Anyway, this post has taken me all day to write and I'm very tired and in a lot of pain, so I'm going to go and snuggle in bed now. If you have any words of wisdom for me, please let me know. I always try to not listen to world but right now I need all the encouragement and prayers I can get.

S xxx

Thursday, 6 March 2014

I WILL stay off pinterest and get this post written.


Wow, it's been a while!... I think I always start my posts with an apology for my absence so screw it, you're not getting one this time! Joking aside, life has just gotten in the way of blogging over the last few months, and, in all honesty, I really couldn't be arsed with writing about everything when I was already living it! That's a good start isn't it!?

Right, let's see... What has happened since my last post!?...

It's been almost two years of trying for our little bambino now, and sadly, we are still baby-less. It's still, and as long as we are without-child, will always be, a gigantic difficulty to come to terms with. I struggle every single day with the fact my body will not do what it is supposed to do. I cannot conceive naturally. My left fallopian tube is blocked, it's still majorly all 'stuck up' on the left side, and I'm not ovulating. But, on the positive side, everything is working as it should be. My ovaries, though covered with endometriosis, scarring and adhesions, are working as they should be and my womb is healthy, which is fantastic news. It's just the rest of it that isn't. I've been seeing a counsellor over the last few months, through the fertility centre, and she has been fantastic. But, until I have that baby in my arms, my mind isn't going to clear. Even writing this, my heart breaks. You will never be able to understand the feeling inside me unless you have been in this position. It's indescribable... A longing, aching void that yearns for this one thing it can't have. I am empty. Just a dark space where nothing but hatred and bitterness grows. I've worked hard with my counsellor and psychologist to try and overcome this feeling, and I'm pretty proud to say that, on the most part, things have been much easier. I've been able to go and visit our friends babies over the last few months and I've managed to escape a lot of the bitterness I previously felt towards anyone with a baby. In a way though, I feel like I've kind of come 360 and now, sometimes, I feel a little obsessed with all things pregnancy. It's hard to put it in to words... I guess all I'm trying to say is that I want a baby. And right now, it's the be all and end all of everything.

We have been super lucky to be granted the chance of IVF and we've both been having various tests leading up to our first (and, hopefully, only) round of IVF over the last few months. I've had 2 follicle - HANG ON! Just in case you are like me and have no idea what a follicle is, follicles are like little sacks in the ovaries which produce eggs each month and basically you want good sized follicles and the more you have the better - unless you have a ridiculous amount because that's bad! I think they grow and then disintegrate because you get new follicles every month... Right, so I've had 2 follicle counts: the first showed I had 12 (6 in each ovary) and our doctor said this is quite low but she was expecting it would be much lower and that 12 is pretty good for someone with severe endometriosis. My second count showed that this had gone down and now I only have 4 in each ovary. I know it can fluctuate but I'd be lying if I said this hadn't bothered me - even if the nurse told me not to worry! Anyway, tomorrow is the first big day in our IVF journey. I go in for a 'mock embryo transfer' to basically see if I can get through the real thing. I haven't read in to it too much but this is where they will be inserting a catheter in to my womb, while I lay there panicking and trying not to pass out!! I'm dreading it. I even asked the boy Danny if he would go in for me, but (in his words) he hasn't "got the right holes"! We then start with all our injections on Sunday so we also have an injection lesson tomorrow too! The whole process takes around a month so by mid April, we shall know - one way or another. I've been really focused on the goal - getting pregnant - and haven't really thought about anything past this or what would happen if we are unsuccessful... I'm not sure I want to think about that. Scrub that, I don't want to think about that.

It's a crazy thought that in just over a month, I could be a mama to a tiny, tiny, weenie, little baby. And what feels strangest, is that this little baby won't be conceived in an intimate, loving moment between us. This process is so public. Even without me writing about it, there are so many people involved. Other people, 'normal' people, get to make a baby by having this mad, passionate, intimate sex... And we don't have that because it doesn't work for us. We have doctors and science helping us to produce this baby. I know it's not meant to matter how we get a baby, as long as we get one, but I wanted so badly for it to just be us, for it just to be a product of our everlasting love and commitment to one another. And, yes, in one way it is, but it seems so cold and harsh an environment, a hospital laboratory. It doesn't matter in the grand scheme of things, but it's all I can think about. Just another thing to kick myself about. To blame my useless body for. And, I don't think any amount of counselling will ever stop me from feeling so guilty for not being able to do something which, as a woman, should be natural. How are you ever supposed to stop feeling that?

Ugh. The tears are here! I knew that getting back to my writing would upset me, because it brings everything to the forefront of the mind again and I think that's why I've neglected the blog for so long. But I can't hide forever.

In other news (some exciting and happy news now!), me and Danny finally have our own house!! We moved in to a beautiful end of terrace house, in a lovely little village not far from where we were previously, around 3 weeks ago now and we are really happy here. It had become a huge struggle living on top of each other everyday in one room, walking around like crabs because there was so much stuff in the room and being so dependent on others to get me anywhere - not mentioning all the belongings we had in storage at 4 different houses! It finally dawned on us that my situation isn't changing and if we were to wait for me to get back to work then we would be waiting a very long time. It all became too much, and in December we made the decision to start looking at our options. Initially we looked in to council housing but we discovered that was as easy an option as finding a private rental so, two weeks after starting the search, we found our perfect house. We were all set on buying a place a few years back but obviously, in this situation, that's not even an option for us right now, so we are renting. It's going to be a struggle for me financially, and as you've probably gathered, it will be done on benefits (on my side). Danny had finally been given his promotion at work in January and was given a hefty salary increase which meant he could live more than comfortably, but there was no way he could support the both of us - not that I would have ever, ever, ever asked him to! - and since I'm still in no position to return to work, it was the only option. Think of that what you will. Thankfully, and extremely luckily, we had already bought the main bulk of the items we needed for the house and had our savings put aside for everything else, so buying the remainder of the items has been somewhat easy. I moan about having had to wait all these years for our house, but at least that time was spent productively. It would have cost an absolute fortune to start from scratch!! So, here we are. Daisy moved in last week and she's settled in really quickly. We also have friends in the village, there are a few necessary shops here and it's got great access to public transport for me so I've already managed to gain a little independence. 

As for the benefits, I've had to apply to the courts for a tribunal because my last assessment moved me from 'support group' status to the 'work related activity group' again! I appealed against this decision, since my situation has not changed at all, but they ruled against me and now I'm trying to live on a lower amount of money each week which is proving rather difficult. My problem isn't with the money though, it's the fact I just cannot go out to work yet. I'm so fed up of having to go through this every 6 months when I have a disease that will be here for the rest of my life! I'm not going to say anything else on the matter because it makes me angry so, please just keep your fingers crossed for me because the last thing I need right now is their mandatory work making my health matters worse than they already are.

As for my endometriosis, well, things have been really all over the place. When I last posted, I'd recently started taking 30mg Duloxetine (Cymbalta) for my depression. I had a rather big break down, and I found myself at my lowest point. I wanted to end everything. My psychologist actually called my doctor while I was with her and got me seen first thing the next morning and my prescription was then upped to 60mg a day. After that episode, and with the help of the tablets, my mind levelled out again and I felt pretty good. Unfortunately, the tablets made my endometriosis flare up and by October/November time, I was in a really bad way with the pain. I came off the tablets and went back to Citalopram 40mg and the pain subsided again to a 'normal' level (for me anyway!). 

My periods have continued to be very up and down, some months 2 weeks early, some 2 weeks late, others barely anything, while another time heavy as anything and now I'm left not having a clue what to expect - though, strangely, they seem to have levelled out more recently and I'm back to a rough 28 day cycle, give or take a day or two. Rough being the operative word! I really never know where I am with them though and my pain levels have been as up and down as my periods have. With moving house, I think I've pushed through a lot of the pain and had things to focus on, but that soon caught up with me and over the past week things have been difficult again. 

I've been finding that my pain has developed somewhat and I now struggle in a lot more ways than I once did. Little things like my hips hurting more, my hands not working how hey should with not being able to grip properly, aching all over, this everlasting exhaustion and aches and pains everywhere all the time. I've been looking in to Fibromyalgia a lot over the last few months and I really do think that this is could be the answer to my developing problems. I have every symptom of it and it would explain a lot of the things that I've been putting down to tablets or my endometriosis, like my twitching. My hips have been the biggest problem though. The burning in them is often unbearable, with or without any pressure on them they feel like they are on fire internally. I brought this up with my physiotherapist and she believes I have a problem with my sciatic nerve. I also mentioned it at my most recent pain management appointment and my doctor said it was all because of the way I was sitting during the appointment. Ridiculous. Anyway, I'm back to square one now because no one will help me. They just think it's muscle problems because of how little exercise I'm able to do. It's so frustrating and I'm left just following their instructions and getting on as best as I can in the mean time. The 'problem' really is that while we are trying for a baby, my endometriosis and every other ache and pain has had to be put aside because I can't start any new medication and therefore cannot be treated for anything. But then, you know what they say - pregnancy can help endometriosis!

Anyway, that's the big update! A bit of a jumble of rants but at least you get an idea of what's happening.

It's Endometriosis Awareness week this week (3rd-9th March) - have you been doing anything to help get awareness of this disease out there? I watched a wonderful interview on (UK) television the other day by the young ambassador for Endometriosis UK, Alice Smith, who was talking about her experiences with the disease on 'This Morning'. In case you missed it, or you're not in the UK, you can catch her interview here (although I'm not 100% certain this will work outside of the UK). 

Also folks, you should have now heard about the Million Women March and if you haven't, well, listen up!

Image courtesy of http://endometriosis-uk.org/civicrm/event/info?reset=1&id=54#.UxibXD80FKp
On 13th March 2014, millions of women will be taking part in a worldwide march to raise awareness of endometriosis. In a bid to turn back the tides of misinformation and let the world know that endometriosis is a serious disease with severe medical consequences if left untreated, these wonderful people, our endo-sisters, will be marching for awareness. The official UK Million Woman March will take place in Kensington Gardens, London on Thursday 13th March 2014 between 12:00-15:00pm but if, like me, you cannot attend the event but would still like to help, you can find out more information at Endometriosis UK or at the official Endometriosis Worldwide March sites.

Anyway, I better go and make myself pretty for Danny... I've been sat on the sofa all day in my pyjamas writing this and haven't gotten anything else done! Will update you all as soon as possible but thank you for reading!

S xxx

Sunday, 22 September 2013

The dumb resurgence of hope.




 



 
It feels like such a long time since I last wrote on here and I have so much to tell you all... And yet I feel like I really haven't done anything in the last month and a half, other than visit doctors and hospitals!

As per usual, nothing has changed with my endometriosis. The pain is still as bad and every now and then I get new, agonising pains that almost bring me to my knees. I'm still on the full amount of tablets and my periods are still all over the place. Last month it was 3 days late and, of course, I got my hopes up, but alas, a pregnancy test soon sorted that one out for me and then said period arrived and gave me hell for almost 2 weeks again. I feel sad that the clump of endo that had been pulled apart in January is back to 'normal' and stuck together again and I think about that a lot. I feel now like the surgery I had waited on for so long was pointless. But then, you have to try everything (again and again) don't you!?

My acne has also been getting worse and worse over the past months and right now I'm at a total loss with it. I bought a fancy facial brush a few months back and it has made a huge difference to the texture and cleanliness of my skin, but it's my hormones that are the problem. I can get my skin to moderately clear and smooth with just blemishes that need covering but then, that time of the month comes and unfortunately, so does a mass of painful, itchy spots. Has anyone got any tips with coping with hormonal acne? I've pretty much tried everything I can now cosmetically, and using the facial brush (which I'll do a little write up on soon) has shown me how dirty my skin still was even after cleansing each day, but, hormonally, what can I try? I don't want to try tablets (I'm on enough as it is!) and obviously the contraceptive pill is out of the question. I've tried one cream from the doctors before but that just dried my skin out terribly and made it sore. Are there any natural treatments anyone can suggest?

I had my second liaison psychiatry appointment in August and boy, what a pile of shite that was. As mentioned previously, I'd been struggling with the fact my appointment had been pushed back by a month already - amongst other things. But, I arrived at the hospital and found I was seeing a different doctor. This time it was a man, and I didn't catch his name but he said he'd be seeing me over the next year. I didn't know how much he knew about my situation so I filled him in but he seemed to forget all that and kept referring back to the letter that my pain management doctor had copied psychiatry in on. I explained where I was having problems, what was happening treatment wise, what had come out of my last psychiatry appointment and, basically, he butted in and ignored everything I said. He told me that other people with chronic pain are able to work so we need to work out why I can't. He said that I'm only depressed because of the recent fertility clinic appointment we had and that after my other pain management treatments (psychology and physiotherapy) are complete I won't be depressed. He also said that I need to get out the house more. Great ha!? So apparently my depression that I've suffered with since I was 16 will all be completely gone by February next year and I won't have any more problems. I tried questioning him on things and tried to make him see that I was attending liaison psychiatry for that exact point, that I cannot get out the house, but he just wouldn't take that in to consideration. I said that I try and get out the house whenever I can but I cannot drive (due to the pain and amount of medication) and cannot always walk the distance to the bus stop. When someone is around to drive me then I will go out with them (he also questioned why people weren't around to drive me - errrmmm because they work!?). He asked why I don't go out for walks and I reiterated my above point and said that some days I can't even get down the stairs without being in agony and when I do walk, I suffer more on the following days - to this he suggested I walk as far as I can and back again. I was so upset that he just didn't listen to me at all and came out of the hospital and sat on a bench in tears. I had waited all that time for someone to give me a totally generalised view of depression and not know anything about endometriosis or care to take in to consideration my situation. I felt completely lost and empty. I didn't know where to go from there or what to think. I was just devastated from it and felt really hurt that someone in that sort of position could care so little and hurt someone so much by not thinking.

I went back to my GP following that appointment and told my doctor all about it and asked for some help. My head was all over the place, I was crying all the time and I felt more depressed than I had done in months. I was at the point of pleading with her when she talked me through everything and suggested I try counselling again along with a different antidepressant. I've now been on Duloxetine 30mg (Cymbalta) for just over 2 weeks and so far I've not noticed too much difference - as I'm not expected to have yet. I feel a little better for having someone understand me and help me but apart from that my emotions are still very much the same. I see my GP again on Tuesday, this week, so she can assess how I'm doing on these tablets but I don't think I'll be going back to liaison psychiatry again.

I received a referral to the counselling service last week, but on the same day I also got my appointment through for my psychology appointment (part of my pain management - oh, and just to add, I'm still on the waiting list for the physiotherapy) and I had my first appointment with my psychologist this Thursday just gone. I didn't know what to expect and was very anxious on the day but my pain management doctor had really recommended this psychologist (who also runs a pelvic pain clinic so knows what she is talking about) so I was somewhat excited about it. I had a few forms to complete and then we sat and talked for about 40 minutes. At the end I felt like giving her a big hug because she enabled me to talk about everything that has been troubling me - not just the endometriosis, not just the infertility, not just the seclusion, but all my other personal issues too. I was really upset from having to talk about everything but I know I have to do that to get past the issues. I see her again in just over a week and between now and then, I have to complete a diary for her and also listen to a relaxation CD for 15 minutes each day. That will be my second of six sessions and then we see where we both feel like going from there. She did say though that I shouldn't do any other counselling as that would work against her work with me (which I had assumed anyway). I've been very down since Thursday and it's been a struggle. I've found I'm more tearful again and I'm thinking more about everything but I feel so thankful that I have found this doctor, my psychologist, because I finally feel like I have found someone who can help me with all my struggles.

Along with all my other hospital trips, we had our second fertility clinic appointment last week. Our doctor ran us through our test results and we came out positively beaming! My blood tests show that my ovaries are healthy and are working as they should be - though I'm still not ovulating. The boy's sperm is well above average and, as you can tell, he's over the moon about that! So we passed our tests and everything is as it should be which is great, great news. From this she has now referred us on to the actual Fertility Clinic (not the sub-fertility clinic which is where we were being seen) and after a course of counselling we will be on our way to starting our little family with IVF treatment! Isn't that just fantastic, fantastic news!? Another good thing is I won't need to have my fallopian tubes checked because having IVF treatment just cuts them out all together, so if the left one is blocked (like they told me in January) it won't matter anyway now. I feel overjoyed and so very blessed that we have this chance. I have read so much now about how you may not match all of the criteria to be put through for IVF, let alone all of those people who cannot afford to have the treatment. We have one course of funded IVF and then if that doesn't work then we will need to pay. At the moment I only know what's on the leaflets they have given us but we have our first planning appointment in just over a week so we should know more then. It still hurts that we have to take this route to having a family and that my body isn't working how it should be, but, nevertheless, we will have a family. I have to keep telling myself that because I know that even with IVF we may still have to deal with ectopic pregnancies, miscarriage or it just simply not working. It's just a case of relaxing and seeing how it goes. It all feels so surreal right now.

I have been battling a little with whether to share our IVF journey on here or not. Since we had our appointment, we've not really discussed it with anyone other than our parents and I've felt like I wanted to keep it secret as others get to do when they are pregnant. But the boy pushed me to continue writing because he is worried I may need support from others while we are going through this. And he's right. Right now especially I really want advice from people who are in the same position as me, or those with endometriosis who have had IVF. If you are one of those people please get in touch because I'd love to know how its been for you. I've read quite a lot on IVF but I suppose it's different for everyone and to be honest, I'm really frightened at the moment. I don't know what to expect and I don't want to be too happy about everything because I know how much stands in the way still. It's such a strange feeling and the boy just tells me to think positively and be happy but I can't because realistically, anything could happen.

We had our little holiday (as you may have gathered from my last post) and that was lovely. I wish I could wake up next to the sea everyday! I've also been on a couple of fishing trips with the boy, my dad and next door neighbour, which have been lovely because I get to sit in peace all day and read and take photos. We cleared my grandma and grandpas house out last week as that has finally sold and that was heartbreaking. But, we got the things we wanted to keep, the things that meant something to us, so our house, currently, is full to the rafters! We've been trying to clear things out and I've slowly been getting things EBay'ed because of it but it takes so long to do! But soon, soon we shall have a clear house again! With all that going on I've been splitting my time mainly between resting and EBay but when that's all done I plan to finally get the shop open - I have 2 big boxes filled with beautiful vintage goods to be sold so far so it needs to be open now, now, now! 

Anyway, there you go, quite a lot has been happening! Apart from that I've been keeping myself to myself and trying to cope with everything that's been happening really. 

Please, please continue to leave your lovely comments and emails because I do read them all. As I said previously, as soon as I've made some headway with this house clearing and the shops open, I can dedicate some time finally to replying to you all - so please don't think you are being ignored!

<3

Wednesday, 14 August 2013

While the boy watches the football...


Hello my lovelies! Thought I'd just check in with you all to see how you are...? I don't think I really have enough news to write a post just yet but, judging by recent posts, I'm sure I'll be able to waffle on about something or other for you all!

As you can probably tell from the photo, me and the boy are currently on holiday. It's so nice to be back down here in Lowestoft, and, more importantly, out of my bedroom! We got here late on Saturday night and so far I've dragged the boy around the little shops and carboots near here pretty much every day, although tomorrow night we are going to this monster truck show thing which should be fun! We are having to take each day as it comes at the moment as I'm in a lot of pain this week. I finished my period just under a week ago now but this pain is terrible. I've even had to start taking my super strong Nefopam tablets (on top of everything else) daily again which I haven't had to do in a long time. I'm getting pretty used to it but it's draining me a lot because it's stopping me from sleeping properly as well. That's the real problem with it - sleep is such a relief from the pain but then the pain keeps waking me up. I just want a break from it!

The pain is probably not being helped by my emotions either. I mentioned in my last update that I'd been struggling with coming to terms with the news from the hospital about our - well, my - fertility issues, but I'm still really struggling with it and, being honest, I could probably spend all day, everyday, crying - if I let myself. I'm so down with it all. I was due to see my psychiatrist (I feel odd saying that!) at the end of July but my appointment was rearranged to the end of August and it's set me a little off course. I hadn't realised, but I'd been kind of grappling on to that appointment, waiting for it so I could set my head straight. But, its not much longer to wait now. I just really need to just talk about all this with someone because I feel like no one understands me right now. I know there are people out there who do understand, my mum certainly does after having years of fertility issues when trying to get pregnant with me, but then she had me and I just have my head set on never being able to have children now. I don't know how to cope with any of this and life seems to just be a massive struggle everyday because of it, and because of the pain I have to live with. Every single little stab of pain is another reminder of my problems and what I'm putting the boy through, and with each stab comes another hit to my mind. Sometimes, I feel like I'm all alone in a big empty bubble with everyone stood on the outside, a busy bustling world looking in on me and a constant noise of people giving advice or comfort when the only thing that could mend this is the one thing I just cannot have. I feel like screaming sometimes, wishing people could hear what it's really like, but, what good would that ever do? All this is turning me in to a very bitter person, a person I never was, and there is nothing at all I can do about it.

It's under a month now until we go back to the fertility clinic and we've done all our tests ready for it. It was quite funny at the hospital actually when we went in to drop the boys 'sample' off. We were giggling like school children and whispering about it to the receptionist when she quite loudly took the sample from us, with a smile, and asked the boy to fill in some details. She must be so used to it but it is a bit strange giving a total stranger a tub of your boyfriends semen! I now just have to go in for my smear test, which is, unfortunately, not until the week before our appointment. I was shocked at how long the waiting list is to get a smear test. I've been very naughty and not been in 4 years now, when I was supposed to go last year. I just hate having internals when I'm in this much pain and it always scares me in case the doctors hurt me more. I just hope it all comes back clear else that's another thing to add to the list... Always looking on the black side!

As for my pain management, I have had a letter through regarding my physiotherapy but unfortunately, I'm on a waiting list - again! I have no idea when that will all come through but I hope it's soon. I tweeted a question earlier asking whether any of you other ladies had been diagnosed with 'endometriosis associated pain' as well as endometriosis, and the replies I had back were so surprising - some ladies even have pain in their knees from the disease! I find it so odd but it's nice to know I'm not alone. Have any of you been diagnosed with this associated pain? I'd love to hear from you if you have.

When we get back from holiday I'm going to be busy eBaying my life away to try and raise some pennies. I've been working hard on setting up a little online vintage shop recently too so I'm also going to get that opened finally. I'm allowed to earn up to £95 per week, I think, before it affects my benefits but I doubt I'll even be making that much at first. I'm hoping to eventually get it up and running fully though so I can have it as my main job, and then,when I'm able to, only have to go out to 'proper work' part time - mainly because I can't ever see myself being able to work full time again. I'll let you all know when the shop's up and running though so you can have a gander. I have quite an array of pretty goods to sell though!

Just before I go, I wanted to say thank you to all of you who have sent me emails or messages about the blog and my writing, and I also want to apologise for not replying. I still have emails in my inbox from last year that I haven't replied to so, to rectify this, once I've got all my bits sold and the shop set up, I'm going to set aside some real time to get in touch with everyone. I feel so awful for not replying but please know that I have read all of your messages and I love receiving them. To know my moany posts are helping some of you really warms my heart and I so needed to hear it all. You, the lovely people who take time to read EMLWY, are the reason I keep writing. 

Anyway, I'm going to go and read some more of my book now while the boy continues to watch the football. I need to have a good wind down and a good nights sleep so I can actually go out and do something tomorrow.

I hope you are all having somewhat pain free days... And thank you for listening to my woes!

Friday, 26 July 2013

The beginning of our big journey.

















Hello beautiful ladies and gents! I went a little off the radar again and apologies for not keeping you all updated. I lost faith in the blog and wanted to completely stop writing because I felt it wasn't helping myself let alone anyone else. But, I am here and I am carrying on. But like I said in my last post, I want to take things back to basics now and find the enjoyment in writing again - instead of feeling under pressure to get lots of posts out constantly. You must get fed up of me constantly saying how much I don't want to write but I find it really difficult sometimes. I was never one of these people to sit on forums or Facebook groups talking about my endometriosis with others because it never helped me emotionally. In fact, still now, I find reading constant posts on Facebook and Twitter etc just wind me up. I know what works for some doesn't always work for others and I believe that to be very true when it comes to talking about this disease also. I love reading people's stories, how they discovered they had endometriosis, what life is like with the disease and what the future holds, but when it's constant talk about something so horrible, well, it just gets me down. But, because I've felt like this, I've also been left feeling like I must be constantly letting all you lovely people down. I'm not an endo sister that posts constant inspirational posts or talks to other ladies all day, every day. Somedays, I'm going through terrible pain and depression and I can't find anything in me that wants to be 'inspirational' - then on my good days, well, I don't want to be brought down. I realise that must sound like the most selfish thing in the world but, if I've learnt anything over the past year and a half, it's that my health is paramount and I must put it first, well before anything else. So I apologise if I don't post pictures of my sorry face and swollen tum every day on Instagram, I'm sorry I don't actively participate in chatter on Twitter or Facebook and I'm sorry once again for losing faith in my blog. Sometimes, I need space from this horrible disease and this is my way of coping. Anyway, I seem to be ranting so let me get back to updating you all on recent events.

June saw the start of mine and the boys fertility journey. Wednesday 19th June was a very big day for us because we had our first appointment at the fertility clinic. We went through our history with our doctor and I explained how damaged my insides were and how my periods were all over the place. Unfortunately, we hadn't been able to get our samples (blood tests for me and sperm sample for the boy) done in time for the appointment - mainly because my period had mucked up so much in May/June - but, luckily, the blood tests I needed were changed so now I just have to have 1 test and then the boys sample. My blood test will be to check if I'm ovulating because, sadly, they don't think I am. I then had to have an internal examination and some swabs taken to check for infections. And then, I had to have the dreaded internal scan! GAH. I've only had one before, when I went in to hospital with my flare-up last year and they are blummin' horrible! I think I got so worked up about it that I made it worse and ended up in tears with the pain. The doctor, her registrar and nurse were so lovely though and were really caring - they were even holding my hand to try and get me to calm down! Unfortunately, it looks like the big mass on my left side, where my fallopian tube, ovary and bowel were all joined together and attached to my abdominal wall, which was all pulled apart during my surgery in January, is now back! I'm pretty gutted that it's gone back to how it was so quickly. But, apart from that, they think my womb looks healthy which is great news. The doctor wants to put us straight through for IVF - on hearing this I burst in to tears again!  - and before the treatment we have to go to counselling together. I also need to continue with my Liaison Psychiatry. We see her again in September, by which time I need to have had a smear test and my blood test, and the boy needs to have got his sample in to the hospital also, and then we will discuss the next steps and about having my fallopian tubes checked for blockages (which they can either do via laparoscopy or with me awake and inserting something in to the vagina - both as bad as each other really!). I was told in January that my left tube is blocked so I'm praying my right tube is fine. Anyway, I'll keep you posted as to what happens next. 

I've been very down since the appointment. It's hard trying to get your head around so many things being wrong with your body - especially with the not ovulating part. My body should do this naturally and yet mine isn't. I just feel completely broken and useless. And so very guilty. Guilty for having to put the boy through all this. Guilty for not being able to give him a child naturally. Guilty for being so completely useless. But, he's still here. I tried to push him away, on more than one occasion, but, thankfully, he won't go anywhere. I'd be lost without him. Just nothingness. 

June was a good month socially because not only did I have my first night out in over 6 months, but we also went to Download Festival and spent a beautiful day celebrating our friends Laura and Chris' wedding. Download was wonderfully epic as usual but it's hard work. This year it was headlined by Slipknot, Iron Maiden and Rammstein. We didn't do as much walking as last year (mainly because we knew our way around this time and didn't have to listen to silly stewards sending us the wrong way!) but it rained pretty heavy on the first two days and, with there being little seating, standing all day took it's toll. By Monday I was completely dead to the world! We managed to find a little tea tent called Motley Brew where we frequented more than anywhere else because they did 'proper' cups of tea and we also managed to get some of Iron Maidens Trooper beer before it sold out (so my one alcoholic drink of the weekend was pretty special!)! I can't wait for next year now but I need to get saving! This years and last years tickets were paid out of my redundancy money so I need to gather some funds to pay for this ticket! As for our friends wedding, it was an absolutely lovely day. I saw friends that I hadn't seen in months, made new friends and even had a little boogie at the end of the night all on top of the moving ceremony and summery location! Congratulations Mr and Mrs. Bumpus!

I had my first pain management appointment a few days ago. After having weeks of being very, very, down and feeling like there was no hope, I came out of the hospital with a new found punch of positivity. The doctor I saw was lovely. She put me completely at ease and was very easy to talk too. She was also commenting on the trousers I was wearing so we were laughing about her wanting to steal them! I had no idea of what to expect other than what the Liaison Psychiatrist had said about getting help with pain relief to enable me to get back to work. I explained to the doctor whats been happening with my health, what treatments and surgeries I've had in the past and exactly where my pain is and how often it occurs. She then did a full examination. I had to strip down to my pantaloons (thank goodness I'd worn nice knickers!... Though they were see through at the back which I don't think the nurse must have appreciated! What a sight!) and move in different ways, like trying to bend to touch my toes, bending my body sideways and arching my back as well as trying to do a little sit up with her poking my tummy at the same time (ouch!). I then had an internal examination too. She was very gentle but she could instantly feel how tender my muscles were. After the examination, she talked through her findings and has diagnosed me with a condition called "endometriosis associated pain". She explained to me that after having had so much endometriosis removed in my surgeries, the types of pain I am having with going to the toilet and a lot of pain in the muscles, along with the pain being constant, all point to it not actually being my endometriosis that is causing the pain but this endometriosis associated pain, which she sees in many women with endometriosis, but not all of them. She also mentioned something about my pain receptors splitting as they are going up to my brain and half off them coming back down in to the muscles. She told me that in the examination I had found doing a sit up with her pressing on my tummy far more painful than doing the sit up without her pressing on it and also, internally, she hadn't touched anywhere near my endometriosis sites, just the muscles on entry. This all points to the same diagnosis. So, she wants me to see a physiotherapist to help my core and a psychologist to teach me relaxation techniques (I feel proper mental now seeing a Psychologist and a Psychiatrist - on top of the counselling we'll be having pre-IVF!). She also suggested I get back in to swimming by doing a width of the pool at first and increasing the exercise from then on. For now I have to stay on the same medication. She wanted to put me on something else also but since we are trying to conceive she suggested I didn't start it as it would be hard to come off of. I see her again in February next year and I would assume that by then she wants to be seeing results. I'm really excited about all this. I feel if I can get rid of this extra pain then I can get back to how I was pre-flare-up and be back to 'normal'!

So, now it's just a case of waiting for all my appointments to come through and to get working on this broken body of mine.

As for my benefits, I won my second appeal also! I was put back in to the support group status in June and since then they've back paid me to March and put me back up to the full amount of weekly payment. Unfortunately, several weeks ago I had yet another 20 page questionnaire from them because my next medical assessment is due by the end of July. Ridiculous isn't it!? I've spent the last 5 months fighting the outcome of my last assessment and now it looks like I have to go through the same thing all over again. At least this time I can go in and show them that some progress has been made with regards to treatment. I'll keep you posted - I can feel a rant coming on so I need to get off this subject quick!

We finally got Bunty and Grandpa's gravestone in place and so we had a little family gathering at the cemetery and few weeks ago for it. It looks beautiful and afterwards we had a lovely barbecue in the sunshine to celebrate.

I went to the Royal International Air Tattoo at RAF Fairford last weekend with my parents and the boy. I am such a massive plane geek and I love watching them. The weather, laughably, was a little cool on the day (it's been an incredibly hot heatwave the last few weeks over here in England - just typical that the one day we want to sit out in it all day long, the sun goes in to hiding!), but we took a picnic and it was a lovely day. On top of seeing plenty of jets and helicopters we also got to see the Airbus A380 perform a special flight flanked by the Red Arrows and it was absolutely amazing. I also couldn't believe some of the tricks the Apache and Chinook helicopters were able to perform. The Chinook especially looked like it was going to drop out of the sky! They also had a special commemorative flight of a Lancaster, Hurricane and Spitfire for the 50th anniversary of the Dambusters and all those who have lost their lives in action which was very moving.

Me and the boy are off on a little holiday in August to my parents caravan again. We can't wait to get away for a bit and be near the sea. It's such a beautiful area of the country and there is so much to see and do nearby. Not long now!

Anyway, this post has taken me weeks to write and the boy finishes work soon so I better go and make myself pretty so he can chauffeur me in to town for a slow wander around! I hope you are all well and hopefully coping as best you can... I promise to post again as soon as I can! 

Thursday, 30 May 2013

Break time over.

















First and foremost, before I start waffling on about anything else, I must apologise for my recent absence and lack of work on the blog. I've had a few weeks away from writing because I was getting a little stressed out with everything that was happening in my personal life and trying to keep up with posts on EMLWY was just adding to it. I needed a break away from all things endometriosis (minus everything endometriosis that I have to live with day to day!) and now I feel ready to catch up with things. So, I'm sorry everyone... Especially for just disappearing without any prior warning but sometimes you just need to get away from things to clear your head.

I haven't written a personal post since the middle of April so I think the best place to start off is where I left you all last time...

On my last post, Is this how happy feels?, I spoke about my hospital appointment and having been referred on to the fertility clinic. Well, we've got our date through for the clinic now and we see our doctor in three weeks time, on Wednesday 19th June. It's all very exciting but I am nervous at the same time. This is a massive thing and I'm praying it works for us. So for now, we just have to wait and see.

My friend, Lou, and her boyfriend, the boys little brother, Scott, lost their baby, as I mentioned before. But, on the day I wrote about it all, Lou ended up in hospital again as the pregnancy fully miscarried. They've been through a pretty traumatic time but the miscarriage has caused no damage to Lou's insides which is great news. It's just a case of taking each day as it comes now and trying to work through it all together.

Me and the boy went to see Saxon in concert again in April as I'd bought him tickets for his birthday. It was the third time I've seen them now and they were fantastic as always. It's now only three weeks until Download Festival so I'm hoping that I'm going to be OK on those days and that we'll have good weather this year! Luckily, as long as I'm not on my period, I should be fine as it isn't too much walking and if it's sunny we'll just be sunbathing for most of the time anyway!

Ooh, do you want to hear all about my benefits kerfuffle!? Well, I won my appeal! Great news, ha!? They decided I wasn't fit for work and put me back in for Employment and Support Allowance. Unfortunately, instead of being put in to the Support Group I was in from May 2012-March 2013, I've been put in to a Work Related Activity Group. The wording on the letter was terrible and I really had no idea what this meant until I received another letter instructing me to attend an interview at my local Jobcentre Plus at the end of April. That day was a bad pain day and after a £12 taxi journey I arrived at my interview, only to be told very little, other than I was being referred on to a work training company who are going to put me into work! I would be earning up to £90 a week without it effecting my now reduced amount of benefits (I previously got £119 per week while in the Support Group whereas in the Work Related Activity Group I get £99 per week) and it would all be suitable for me to undertake. Even writing this now, I am infuriated!!! I was basically being sent back to work to earn nothing because my taxi costs there and back would cost me £24 per day - a total of £120 for 5 days work!! So I'd actually be losing money for going to work - never mind the fact that they hadn't taken anything I had said about not being able to work due to pain in to consideration. I explained everything to the adviser who was interviewing me and he suggested that I appeal again and ask to be put back in to the support group. I left the Jobcentre almost in tears. I was in agony, I'd had to get my mum to accompany me in to town to help me and had to spend £24 in taxi costs for this. So, that night I wrote out my second appeal letter and got this all sent off by the end of that working week. So far, all I know is that they have received my appeal paperwork, I don't yet have any word on the outcome. I'm just fed up of fighting for something that I should be supported on... Especially when there are so many people in this country who have nothing wrong with them, yet get so much money given to them from the government. Where is my help!? Anyway, that's all I'm going to write on the subject right now because I can feel my blood starting to bubble away and I really don't want any more stress right now! I'll keep you all informed as and when I hear anything though. I just pray it's good news... Maybe I should just go to them for further treatments for my endometriosis, since they seem to know so much about it... OK. Stopping now!

My papa celebrated his 65th birthday at the beginning of May and we all went out for a massive family meal at Marco Pierre Whites in Nottingham. It was a beautiful meal and we all got a little tipsy... Including me! I had half a bottle of cider and 2 large glasses of wine and that was me done in! I should not have drunk that much because it made me feel really bad that night! That weekend, we also went to the rugby to see Leicester Tigers pummel London Irish 32-20! Papa also managed to get us corporate tickets so we had dinner and drinks before and after the game along with free gifts and padded seating - which my bum was very grateful for!

As you might have noticed from the photos above, me and the boy went away for a little holiday in the second week of May. We went to Butlin's in Skegness for a few days and had a lovely time. We celebrated our three year anniversary while we were there and had a romantic seaside dinner of chips, fishcake and mushy peas, washed down with a can of pop!... We know how to do romance! I got myself a new bit of ink also, a little Sylvia Plath quote on my leg which I am absolutely in love with! Butlin's was a little overridden by children and more than a little expensive, but we got out each day to see the sights and really enjoyed ourselves. 

We went to the rugby again when we got back home from our break and (again) watched the mighty Leicester Tigers thrash their opponents London Harlequins 33-16. This took us Tigers to the final at Twickenham, this past weekend, which saw them win the premiership against Northampton Saints 37-17! I've really gotten in the rugby over the last year and I'm quite impressed that, finally, at the age of 29, I'm understanding a sports game!

Apart from all that, I've just been either at home, resting, or having little wanders in town. I recently managed to make it in to Loughborough by myself, on the bus! A massive feat! But then, the boy had to pick me up and I spent the next few days in bed recovering! The weathers picked up a bit recently (minus the odd days of heavy rain!) so we've been able to have barbecues and go for slow walks in the sunshine. I just hope the weather continues to pick up so we can have a nice warm summer!

Me and the boy have now been living together for almost 2 months and it's all going swimmingly. It's certainly nice to fall asleep and wake up next to him every day. I just need to get back to work so we can get our own place!

I have noticed that things with my endometriosis have gotten slightly better. Only slightly but that's better than nothing at all, like it was before! My periods have been heavy and painful still but, I think, they've been a little less painful and heavy than before. They had also been starting to get in to a pattern of being early - until this month anyway... I don't know what the heck's happening with my period right now! I'm not due until next week but I've been spotting lightly, on and off, since last week. Obviously, you all know what my first thought was, but I don't think it's that. I think it is just my period being a pain in the ol' butt! I have noticed, however, that whereas the pain during my period has eased slightly, the pain I am in the week after my period is terrible. I have been in so much pain the week after the last few months that during these times I've been almost completely bed bound. I even had to take some Nefopam on top of my normal Tramadol and Ibuprofen daily mixture last month. As you know, the fertility treatment is the next step for me so for now I just have to put up with the pain.

Luckily, however, I have now received both my Pain Management and Liaison Psychiatry appointments which are both in the last two weeks of July! I'm so excited about finally getting my Pain Management date through though - even if I have got a bit of a wait still! I'm so hoping they can help me - even just to get me off this Tramadol which I am really starting to hate now. I am twitching like mad all the time and I hate how it makes my body feel. I can't even describe it - it just feels horrible.

So, there you have it. I'm having a lazy week at the moment because I am absolutely beyond exhausted! I even had to have an afternoon nap yesterday which I never, ever do! I'm hoping that I'm going to be OK for the weekend as I've talked the boy in to taking me over to Leicester for a wander on Saturday and then on Sunday we are going for a meal with the boys family to celebrate Lou's birthday and his Mama and Papa's 30th wedding anniversary.

I have quite a lot of work to get done on the blog and some things are going to be changed a little, mainly to take a bit of pressure off me really. I want to enjoy EMLWY, not feel like I'm chained to it - which is how I was feeling before the break! I have a few stories to go up still (apologies if you've sent a story over and I've not contacted you yet, I'll be getting around to it all soon!), but if you haven't yet sent your story over then please feel free to email me at shireen.emlwy@gmail.com. Also, remember folks that Google Reader will be binned soon so please head on over to Bloglovin' and follow EMLWY through that! Anyway, keep an eye out and I'll be back soon!... Ta ra for now!
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