Awards and Fun

Ok, so after the last few heavier posts I'm getting on to some more lighter, fun ones. If you want to read my endo update scroll down to the previous post.





But without further ado I must pass on the lovely award Clairey bestowed upon me yesterday - thanks Clairey!! Just to let you know, I met Clairey last year sometime (I think it was) and just fell in love with her blog and well Clairey too! She just cracks me up and I always feel so warmed by her posts. Seriously, go visit her if you haven't already!!





So this is the award:

Clairey's entry quotes the following about this particular award: "The authors say that blogs who receive this award are exceedingly charming. This blog invests in proximity in space, time and relationships. These kind bloggers aim to find and be new friends. They are not interested in prizes or self-aggrandisement. Our hope is that when ribbons of these awards are cut, even more friendships will be propagated. Please give your kind attention to these writers."

I always find it difficult to choose between all the wonderful blogs I read for passing on these awards but find great joy in trying to decided which ones fit which award and passing it on, hoping that the recipients will feel as much joy at receiving it as I did. So without further ado, here are my choices for this one:

Yes I *DO* know I have ten blogs listed below and I should only have eight but I don't care - I just couldn't cut it down any further and even so had to leave out several blogs I would have added had I not already exceeded my limit lol.. and yes I *DO* realise that nearly half of them are "endo blogs" but this award seems to fit those so well as the whole point of "endo blogs" is to develop friendships and support for such a painful illness. And YES I would have passed it on to Clairey had she not passed it on to me in the first place LOL

Maddy's Glass House - I love Maddy's writing style, enthusiasm and Aussie-ness :o) and look forward to reading updates on how she and her family are doing.

Higglety Pigglety - ever since finding out about Joanna and the adventures of Captain Rupert I have been a huge fan. I love exchanging the odd mail with them and even had the chance to write a poem about Captain Rupert which was an absolute joy as he is the funniest little bunny you will ever get to meet!

Vintage to Victorian - I adore reading Sue's updates on Dairy House Antiques - so charming - but even more I love the wonderfully, insightful posts like her recent one on "magic moments" from the past. Sue is such a friendly blogger and I am so glad I stumbled upon her blog one day.

Linden Grove - Simone's blog always excites me with her recent step-by-step projects and her tales of marmalade making etc and who could not adore the photos of Gizmo?!

Redwood House - Jan is such a friendly blogger, often popping by with a comment, and never forgetting to tell us tales of Jenny the dog (love Jenny) and recently the two cats - let's just say I love blogs which make me feel like I have been round for a cup of tea and know the whole family - that's what blogging is all about

(and on that note) Ragged Roses - was one of the first blogs I ever visited regularly and I feel as if I know Kim and her family like my very own, such are her tales of family days out and nights in with the girls, watching films they adore... I cannot enthuse enough about how much I love reading her updates!

Bio Girl - I found Sarah's blog only recently but have been an avid reader ever since - I love her wit and reading her blog is always a joy because she seems to be forever happy at the moment!

Ready Go: Battling Endometriosis - I had to include Amy because she has become such a close friend since I found her blog and we both starting injections (she continued when I couldn't). She is having such a hard time at the moment healthwise, and yet still finds the time and energy to invest in others - she is inspiring even though she may not feel that way and to me she embodies this award more than anyone else right now!

Jeanne's Endo Blog - I have been reading Jeanne's blog for a while but only starting exchanging messages last week and so although our friendship is new I want to pass on this award because of all the time and effort she puts in to helping others to cope with their pain and becoming such a great friend to so many people!

My Journey with Endometriosis - This was the very first "endo blog" I ever found and read and it was so friendly and inspiring that it led me to search for more. How can I not include this blog in my list of blogs which inspired friendship and closeness?

I hope you enjoy visiting some of these blogs - and those of you who I have passed it on to enjoy receiving the award and choosing people to pass it on to.

Amanda x

Update on appointment

Well my appointment went as well as we could have hoped - apart from the fact we took a bus for an hour to get to the hospital, got there half an hour early, then had to wait because the clinic was running 90 minutes late and then have a quick lunch and get an hour's bus back. We were out of the house for 5 hours for a 2 minute appointment lol Incidentally, the last time I took a bus to the hospital I was working at the nursery there (which I left in April 2007) so that was weird - it felt like going back in time!

Anyway, the gynaecologist was lovely and asked me loads of questions about my symptoms and my previous lap (she even asked me what grade of endometriosis I had but I was never told and obviously it was either never noted or got lost between doctors as I have changed 3 times since my last lap). I always wondered how other women knew what grade they had - maybe I'll find out when I go this time. I've been told that all being well it will happen on May 13th. Now I know my last post said I didn't want a lap right now because of how I react to the anaestethic but I spoke to the gynae and she said if I speak to the anaesthetist (is that how you spell that word?) they will try and keep the dose low and make sure I'm as comfortable as can be. Also, with the date being set for May it gives me a couple of months after we move house to get my strength up again and then a couple of months after it to get back on par before going to Italy...

Talking of Italy I am SO scared of flying there - I always felt so dizzy when we travelled by air because of the pressure change and since having the ear infection last summer I still get dizzy when we have a rapid change in air pressure and weather. I also have a mini-phobia of being sick (developed it as a child and although I deal with it most of the time the thought that I could get up in the air and get the vertigo back and be sick the whole journey just fills me with dread). I'm planning on going to see my uncle (who is now a trained hypnotherapist) to see if he can give me some coping strategies... I did ask T if we could go to Italy by train but it looks so expensive I don't think we can afford it :o( even with the added bonus of a day break in Paris on the way and the fact it will, I think, be more environmentally friendly than flying.

But back to the lap... I don't know what they are going to find this time beacause the pain, though more regular than before my previous op, it is not as intense - before I thought I might die from the pain, now I just curl up and cry but can cope with it. Also last time I had heavy bleeding but now I rarely bleed and when I do it is tiny amounts (which makes me hink the mirena is still stopping the lining building up in the womb itself and the pain is coming from implants in the abdomen where the mirena is not affecting hormone wise - does that make sense? They are going to replace my mirena at the time of the lap because it is due to be changed next year anyway and they are hoping that as I had 2 years symptom free with the mirena first time round changing it for a fresh one may help again. Here's hoping...

Anyway - my mum went home today, which was so sad because I have really enjoyed having her down, not jus bcause she heled me pack and supported me today at the hospital, but also because I get to see her so rarely these days and even when I do it is for a few short hours. Having several days with her and being able to show her my workplace and the city I have grown to love has been wonderful. T said she can come and stay anytime in our new house so I hope she will - perhaps if my dad goes away again at the end of the year she might be persuaded to come down on the train again.

Apprehensive

Ok, this is another endo post - for those of you who have followed my blog for a while and are suddenly wondering why I'm blogging so much about this atm and not about my usual things it's because at present I really need this to be a place to express the pain and fears I'm experiencing. I'm not abandoning my usual topics, just putting them aside for a while (though they will still crop up within my posts).

Ok, so now I've got that off my chest I'll get on with the post...

I'm going to the gynaecologist tomorrow and am, quite frankly, a little nervous. Last time I saw the gynae was 4 months ago and they prescribed Zoladex (to start a pseudo-menopause). I started the injections in October and only had one month of the prescribed 6 - my symptoms were so bad... I was in doubt at the time whether to stop but knew I couldn't continue the way I was. And even though I am still suffering I am so scared they may be dismissive because I didn't give it a proper chance.

I'm looking through my symptom diary (which I kept to great detail during the injections and in less detail after) and have just created a table to chart the symptoms in for a quick glance sort of thing to show them. I'm hoping that because the gynae I am seeing is part of a "menstrual disorders" clinic rather than a general OB/GYN that they may be more helpful than some I have seen in the past. But I'm still scared...

What scares me the most is I have decided that unless they can come up with something other than a laparoscopy or more chemical treatments to affect my hormones I'm going to ask them to refer me to a counsellor and pain management clinic instead and see my again in a year's time when I will almost be due to have my mirena taken out (and replaced if I decide to carry on with it). I don't want more chemicals because I have reacted badly to all the contraceptive pills they tried, norethisterone and now the zoladex - I just don't think my body reacts well to hormone treatments. And although a laparoscopy is only a minor op usually I generally react badly to the anaestethic (i.e. I shake uncontrollably when I come round and then feel completely hungover for at least a week which slows my recovery) and my first lap (when they were still convinced I had nothing wrong with me) turned into an overnight stay due to unexplained bleeding in my abdomen and I ended up being in agony for 3 months after it. I just don't want to risk any unexpected problems - not whilst I feel my body is so weak and when I have to have my mirena placed next year and would rather wait until then if I can and do it all in one go.

Maybe I'm worrying needlessly, maybe they'll be really nice and have a great idea up their sleeve... still, I can't help but worry. I'll be glad when I've been and don't have to imagine how it will go.

Changes and the crazy linguist

First of all I want to say thanks to all of you who left comments on my last post. I have spent the weekend quietly cuddled up in T's arms, talking things through with him and working through all the emotions running through me at the moment. I am still feeling sad and anxious, that's not going to go away overnight, but I am feeling more at peace as I gradually work through the changes I need to make in my life. Don't get me wrong, these changes make me so sad in many ways, but also hopeful for the balance they will bring into my life. For example, I spend far too much time online - and by far too much time I mean I often sit here aimlessly trying to find things to do to occupy my mind so that I don't have to focus on how I truly feel. I sat down this evening and worked out how very little time outside of work and commuting I have to do things and how many things I try to fit into that time and realised I needed to change. When I was first at university and did not have instant access to the internet I used to sit in bed for an hour reading for pleasure each evening - I never read for pleasure anymore and want to do that more. To do this and have moments in the day to be quiet, still and truly relax I need to cut out many of my projects just so that I do not wear myself out completely.

Having read Jeanne's comments in particular I realised just how crucial taking the time to be kind to myself is and how very rarely I do this. I always feel so time pressured and try to do everything in as little time as possible. Right now I work 37.5 hours per week, but due to buses am actually out of the house 5 days a week between 7.40 and 6.30 and in the summer this changes to 4 full days and 2 half days to fit the rota of 7 days of service to the public. We have to move the whole of our office in the midst of the summer season (our busiest time) and I need to have enough energy left to enjoy our trip to Rome and hopefully cope with the tour guide training come September. I can't do that whilst trying to fit in foreign language practise and revision, keeping up with friends on here and the two forums I visit as well as running a whole other blog/website. I feel the need to prioritise for my health so that I do not get as ill as I have previously - that means cutting things I may love for my own sanity.

So now I am planning on only spending 1 hour online most days and prioritising emails and blogs as these are the places I keep up with the people dear to me and where I find the support and inspiration I need to carry on - I will also be streamlining my lists on bloglines to ensure I am maximising my time with people I am most in tune with - this does not mean I'm going to suddenly cut contact completely with everyone - just that the people I find I rarely contact will be kept up with on those days I have more time (e.g. weekends) rather than every day. Which means I'll also stop popping by facebook and myspace - it makes me so sad because I love keeping up with people but it is just too much right now. I'm also going to take a break from my reiki blog because at the moment I worry about not updating it - there is enough info on there for new visitors to have a look through whilst I take the break I need.

In essence I have realised, finally, that I need to be compassionate to myself in order to be compassionate to others - how can I serve as a friend to others when I cannot be a friend to myself? This is such a hard choice for me to take. It means I am not going on camp this year because spending a week looking after someone's needs 24/7, taking up a week of my holiday entitlement when I will need it to rest after the move at work and the busiest weeks of the year prior to flying off to Rome, would just be too much. It breaks my heart to not go - but whereas in previous years I could go knowing I'd have a good month to recover before returning to uni I now have to go straight back to work and I am beginning to realise that working full time takes it out of me and that however much I wish it wasn't the case I cannot change this and it's ok.

There are other changes I am planning - all working towards giving me more time to rest and relax meaning that I have more energy and enthusiasm to then enjoy the things I do. The changes are so hard for me because I am such a busy person by nature, always looking for new projects to keep me busy. At work I am always asking my supervisor to give me something to do because I can't cope with being idle... that is something I need to work on - realising that being at work doesn't mean I have to be busy every second of the day! I need to rebalance otherwise I will burn out again, which is the last thing I want to do.

Now on to the crazy linguist story... I was recently chatting with Chas about hairstyles and whether she should get bangs or not. Now, I'm sure you all know what bangs are... I thought I did too! Seems not... I had somehow, along the line, decided that bangs were long, sweeping fringes that framed the face and that anything that was cut straight across the forehead and looked, well like a fringe, was called a fringe. I made a distinction that didn't actually exist... lol.

I do this quite a lot, you know. It's almost like my mind cannot cope without somehow assimilating words and phases and sometimes creating meanings that do not exist in the real world. More than that, I often misunderstand what T says in such humorous ways. He mumbles a lot and I will think he has said something completely wacky and obviously wrong but I am convinced that is what he has said. I can't think of any example other than when he once said the word "boobies" (lol) and I thought hed said "jelly beans" - how on earth I misunderstood that one I don't know. It's almost like I have trained my ears and mind over many years of language learning to pick out key sounds and put them together without any conscious thought on my part... it makes me wonder how many times I have completely misunderstood someone in another language much to their amusement if I can do it so easily in English. It must work right sometimes though - I remember once hearing the lines of a song in Spanish and although I'd never learnt Spanish I knew it meant "to kiss your sweet lips" because the words to kiss and sweet were similar to words in other languages and guss how I knew the word lips... it sounded like labia (you know from the "down there" area!) It actually took me longer to figure out how I knew what the word for lips was than for my mind to figure out the song was about kissing... crazy, huh?

Realisation

Even though I was diagnosed with Endometriosis in 2005 and had most likely had it for several years before that I never really accepted that I was living with a chronic condition - and all the ways in which that can screw you up!

Every so often, say every couple of years on average (but sometimes far more frequently) I go through such a dark period. I get depressed and find myself unable to cope with anything. At uni I approached the doctor about this and was brushed aside as "suffering from stress". And I believed her. Throughout my adult life in fact I have had people respond with similar things "It is just because of your job, changes in your life etc". Don't get me wrong, I know that the circumstances in my life make it harder to cope - but I'm sure I shouldn't feel this bad.

It has only been recently that I realised that despite having a boyfriend who totally adores me and a job that I not only love but cannot imagine not having I was still utterly depressed. I truly mean it when I say I love my job - I am finding it so difficult at the moment to cope as I am exhausted beyond belief due to the symptoms of my endo and after a couple of weeks at work I am flagging desperately, and yet the thought of cutting my hours to cope or making changes to my responsibilities fills me with such great sadness. So it's not as if I am unhappy in my work as I have been in the past, or lonely because I have a great boyfriend who cares deeply for me... we're even now getting ready to move into a gorgeous house and have more money than we have had for the past 10 months! I should be so happy - and yet I feel empty and the only feeling I seem to be experiencing is sadness, so deep it hurts and makes me want to do nothing, even though doing nothing makes me sadder.

And this is why I am now realising that I am not a naturally unhappy person - in fact T has always said how optimistic I am (last year through all the problems I still managed to look forward with hope - it was only when I started on the injections to start the pseudo-menopause when I lost that hope). I can be worn down by circumstance but usually rise above it and now when I look back at all the times I have felt so lost, alone, scared and empty it has been when I have been having problems coping with the effects of my endo. Which sucks. Big time.

I go to the gynaecologist next Thursday, who is expecting me to be 4 months along with the menopausal injections when in actual fact I had them for one month, stopped in November and am still suffering from insomnia, mood swings, more pain than I was in before and complete exhaustion - not to mention the odd bit of paranoia. I missed Christmas and New Year due to feeling crap both physically and emotionally and now, at the end of January, have struggled to get through the last couple of weeks. And yet, I still find it hard to be vulnerable and let people help...

I guess because I never realised it was an effect of the endo I felt weak and couldn't let myself be open to the possible hurt of being told yet again (even by friends) just to "get on with it"and "cheer up". It hurts to open yourself up to people and tell them you are sad or hurting to have them brush it aside or just get fed up of it going on for so long - because sometimes it does go on a long time. Far easier not to bother - and that is the pattern I created and now need to break. Let me explain - I worry constantly about how my moods will affect T - will he get fed up of me, will it be too much for him etc. No matter how much he tells me he will never get fed up he does admit he cannot understand what I'm going through and that is hard for both of us. What is worse is the fact that in recent weeks I have felt distanced from him because of what is happening and that scares me and makes me so sad.

I don't want to burden him with having to deal with it alone and whereas I began the treatment last year with the intention not to tell many people I have ended up telling most of my colleagues because it has affected me so badly I couldn't hide it. And yet I find it so difficult to say "I need a break" or "I can't do this today" and want so badly to be normal that I continue to do all I usually do on a normal day. Like yesterday - my supervisor asked me how I was and when I said I hadn't slept and was exhausted he sat down to talk to me but I became my usual defensive self when showing how vulnerable I am and brushed it aside with a "what can you do?" shrug and he left it at that. Then I felt rubbish for wasting the opportunity to tell him I didn't feel I could cope with this and that at times because the more I think about it the more I tell him the more he and my manager can help me come up with strategies to help me cope at work. He made me go home early, as did another colleague, anyway and even though I as grateful to leave I felt like a failure for not being able to make it through a whole month without taking a day off and cried all the way home. T then rang my supervisor to tell him I wouldn't be in today and I am planning on trying to set up a meeting with him and my manager after my next hospital appointment to discuss work and some strategies to help me cope on bad days.

I felt a bit better after reading a factsheet by endometriosis uk which gave me the following statistics:

• 82% of women surveyed have lost days of work due to endometriosis in the last 5 years
• On average, endometriosis patients lost 6 days of work each month
• About a third had to reduce their working hours, retire or have lost their jobs as a result of the disease
• 43% of women affected are afraid to tell their employers in case it affects their job prospects

That last one I agree with - even tough I have told my employers about it I have tried to carry on regardless and have turned up to work even when I shouldn't have because of fear that it would affect my job. My direct supervisor and manager are great about it but with the council planning on job cuts due to losses in investments now feels like the wrong time to show weakness! Also, if I begin doing less of a job, will that make them think they made the wrong decision to hire me? It's quite alarming to see that so many women lose work or time at work due to endo and yet it is so often a taboo subject. I told my supervisor how hormonal I was once and all the women at work told me (and always tell me) "Oh he won't have wanted to know that" - I personally think my supervisor is cool because he actually cares for all of his assistants which is so clear to see in the way he deals with us all and he has never brushed me aside when I have, on occasions, spoken to him about it (not in great detail but just to say - "yeah I'm emotional today, can I do something in the back office rather than facing awkward customers!")

The statistics leaflet also stated:

"Seventy three percent of the women surveyed felt that endometriosis had adversely affected their relationships with their partners, their friends and their children."

This makes me feel a little better over the way I have been with T - honestly I love him dearly but not in the same way I did before - it's like I cannot cope with all the emotions of it all and I HATE that because I cannot imagine my life without him yet at the moment I need him to be more than he can be and that puts such pressure on him. I cannot tell you how much this grieves me but knowing that almost 3/4 of the women surveyed felt the same pressures makes me feel a bit better knowing it is not just me alone causing this.

Ok so if you have made it this far, thanks for bearing with me - I know it can be tough to understand all this if you've never experienced it - after all when my mum (who has M.E) used to tell me she was tired and couldn't do things because she hadn't slept I used to be quite dismissive (oh to my shame) but now that I have experienced the effects of insomnia and what being tired really means I can relate much better. I just needed to get it out today.

la français and an Italian wedding

Have I ever told you guys about my best friend from school? She's the coolest and I don't know why I've never mentioned her but seen as though she has just invited me to her wedding IN ROME this summer it seems right to tell you how très cool she is!

I first met her when we were 14 or 15 (around that age). I'd seen her around school and heard she'd come to England from France but that was all I knew about her. I used to see her sitting quietly with the group of people who had been asked to show her around and I just assumed she was shy or something. Then one day in woodwork class I noticed she was struggling to hold her wood and use a saw at the same time. I asked the people she sat with if anyone had helped her to use the table clamp and the only reply I got was "I don't know - I haven't asked". So I toddled over to see her and helped her get the clamp working (it was so jammed shut no wonder she'd not bothered trying to use it!) That was the only meeting we had for a while - but years later when we were friends she told me she remembers that moment so well because she felt like she finally had a friend at school... that taught me more than anything ever before how important it is to make an effort to do even the seemingly smallest things for other because it can mean such a lot to them!

Anyway - by the time we started our GCSEs we started sitting next to each other in a couple of classes and that's when the friendship really started. That's when I discovered she had lived in Italy until she was 6, France until she was 12 and then come to England. That's when I discovered her paretns were Salvation Army Officers, that she had two younger sisters (one of whose names I could never quite pronounce correctly!) and that she loved Céline Dion (at that time) as much as I did. Oh the times we spent singing at the top of our voices, driving everyone around us insane hehe.

Her family had to move to Wales when we were 16 so our friendship really wasn't that long in person - but our friendship is one of those that lasts no matter how long it's been since you last saw each other. During our GCSE exams my friend lived with us for a glorious two weeks (how much more can you ask for at 16?) because her parents had already moved and she needed to stay to take the exams. After that we tried to visit each other once a year until she moved back to Italy, where I visited her in 2004 and she visited me in 2006. So it's been more than 2 years since we saw each other and imagine my joy when she asked me to her wedding :o) I feel extra honoured bearing in mind just how many friends she has and how hard it must have been for her to limit the number of people she invited!

So that's my best friend - and the Italian wedding I mentioned... but what about the French you ask? Well, we have a girl from Belgium working at the TIC with us at the moment and I have been making use of her language skills to help me recover the French I lost so many years ago. I gave up French at 16, which is a shame because I used to try reading my friend's books and we'd sing in French and all sorts of things like that so my French was actually not too bad for the level we were at. But now I have forgotten it all... so I'm recapping! And much to my joy I am finding it flooding back so quickly - yay. My plan is to use my job to really use my languages... my friend was such as inspiration to me - what with being trilingual when I knew her and now speaking another language on top!! I want to be like her - and so I shall be... one day... I hope!

I also work with an Italian girl who is going to help me brush up some Italian skills before our Italian break - fancy getting to go to Rome for a wedding... ooh I love it so much!

Delurking Day

Ok, ok so I know my last couple of posts have been a bit heavy - sorry about that! I blame the hormones - today was a much better day :o) I'm feeling quite jolly in fact...

And then I came home to find that it's Delurking Day - I almost missed it *gasp*. Delurking Day is a special day for me because it was the first time I finally got over my fear of commenting somewhere I wouldn't be welcome and started actually talking to the people whose blogs I'd been following for months. Once I started I didn't stop and now I comment all over the place lol... but I still remember Delurking Day fondly.

Now I have a pretty nifty blog going on here I feel like having lurkers of my own is a good way of seeing how read-worthy the blog is - no respectable blog has no lurkers!! So come on - any lurkers other there? Fancy making my day and saying "hi"? You know you want to :o)