Tuesday, 31 March 2009

Onto a happier note...

My posts of late have been rather dreary, which in a way is why I love blogging so much - it helps me look back and see how I was feeling at certain points and note the patterns of thought and behaviour I go through. How else would I remember exactly how much I have been obsessing over health issues, when so often our memory is inaccurate? I mean I often remember hard times as easier, happier and forget just how happy the happy times were - it's like I remember the essence of a feeling (I know I was happy/sad etc) but I do not remember the level of that emotion - it's good to see that, and as I was never any good at keeping a diary blogging helps me to come close to keeping one.

And so, looking back over my previous posts, I realise that my worry, though legitimate, has been a bit obsessive. I can't change what is happening and worrying about it isn't doing me any good except making me feel even worse. So, with that in mind, I am going to use this next blog post to list some of the ways in which I am blessed and remember some of those people and situations I have had in my thoughts and wish to pray for - doesn't tha sound like a much better blog post? It certainly sounds like a much better inner dialogue for me to be having anyway!

Blessings

  • I have a wonderful boyfriend who loves me with all his heart, cares for me deeply, laughs at my silliness and consoles me in my darkest times. He cooks, he cleans, he gets up early to ake my breakfast... all this and more to try and make my life easier for me during tough times. And more than that - he understands me. He understands my need to sometimes obsess over things just so that I can figure out for myself what it all means for me. He even takes me places he may not want to go originally but does because he loves me - and because he understands me on such a deep level he often finds he enjoys it himself in the end - how amazing it that?
  • I had a beautiful childhood, no matter how many times I complain about this or that (which really isn't that often to be fair). I was loved, guided, protected and yet allowed to make my own way in the world when I was ready. If it weren't for this great start in life I wouldn't be the person I am today, and although it may sounds strange I am proud of the person I have become (which is a BIG thing for me to say because I find being proud of myself very difficult).
  • I have amazing friends who, although not always close in distance, always remain close to y heart. Friendship is everything we could possibly ask for as far as I am concerned - T and I wouldn't make half as good a couple were it not for friendship!
  • I have a job - that pays pretty well even at the lowest end of the pay scale and includes a good pension scheme and repayments of my student loan. In times like this when so many are out of work I am so thankful both T and I work - despite my anger sometimes at never having any money left by the end of the month and never being able to buy things just because we might want a treat, I am thankful we have jobs and a home.
  • We have a beautiful hoe to return to each day - no matter the distance and inconvenience of commuting - in fact the commute has brought me time in the day to read, meditate and pray - things I never did on a daily basis before.

Prayers

  • I am keeping all my friends and family in my prayers, especially those who are facing life threatening illnesses within their own families.
  • I am praying for those I have met through blogging who are struggling so with their health, particularly endo-wise right now.
  • I am thinking of a colleague who is struggling with mobility issues right now - the pain it is causing her both physically and emotionally as she learns to readjust from being terribly active to unable to do anything.
  • I am asking to see the way forward with my own understanding of my beliefs - of God, Spirituality, life, death, reason and purpose... I am trying to be open to new ideas (and old), and to those sent to help me work this out at this stage in my journey

That will do for now - a much needed post I feel. I must run now otherwise I'll miss my bus. Hope you all have a lovely week. xx

Saturday, 28 March 2009

22 and a half days

Thought I'd better update you all on the work situation.

I had an "informal meeting" with my manager as advised by HR to inform me that I won't be hearing from occupational health until after April 1st as we are changing the company who do all that stuff. So that means I have to wait longer to find out what they are going to say. I did find out during this meeting that I have had 22 and a half days off since starting at the end of August last year - which is a lot. I understand that. I also understand that they are concerned because they have not all been for the same thing - even though I have told them they only reason I get so ill so easily is because I am so exhausted from dealing with the symptoms of the endo. Anyway I'm currently trying to use my time to find articles I can take with me to back up my case.

One of the things that has been bothering me is the fact that I remember saying in my interview that my health was fine. It was - I'd just suffered the bout of labyrinthitis and I told them about that but it was the first time I had really struggled with my health since leaving uni in 2006. I had had 2 years symptom free of the endo and although the pain was creeping back in it was manageable and I had not had to take any time off for it - plus I had previously had a scan and all seemed well so why would I worry about it? Aside from the odd stomach bug (which everyone gets especialy when working in nurseries with loads of babies) I had not taken any time off work. But seen as though I've only been there since end of August and my endo has become a continuous nightmare since they tried the Zoladex injections in October it doesn't look good - almost like I lied about my health...

And this thought plagued me all week until I remembered that I had to fill in a health questionnaire before being approved for my job - even though I'd passed the interview I couldn't be accepted until I passed the health check. I wrote down three things on that form - hypermobility of joints, labyrinthitis, and endometriosis. I even spoke to a lady on the phone who was concerned about how standing up for long hours would affect my joints and how the inner ear damage could affect my ability to work - neither of which have been a problem once. And yet she never once mentioned the endo - it didn't even seem to cross her mind that it would be a problem. So if someone from a health screening company didn't think it necessary to bring it up, why would I?

I've spoken to a few people who have put my mind at ease a bit more this week - my dad has told me he gets things from HR about staff under his management and it is a requirement for the company to make sure it is nothing work related that is causing the ill health, and my aunt has told me she was called in my occupational health when she started getting migraines and despite fearing she'd lose her job over it, it all turned out fine. I just wish I'd been working there a little bit longer before all this happened so that I didn't have to worry that people thought I was just lazy and/or weak.

This is, of course, my biggest concern. I know there is nothing I can do, not really, to change what happens with HR and occupational health. I can be informed, sure, and I can make sure they don't try and make me feel bad or pin blame on me, but at the end of the day a policy is a policy and if that means I have to go see them then I have to go see them and there is no point in stressing myself out over it because that just makes me even worse. But there has to be something I can do to ensure those around me do not start to resent me for the extra pressure put upon them. Both my manager and supervisor this week have brought it up with me that my ill health does put pressure on others because I was brought in to ease the pressure they suffered last summer which I have heard was horrendous. Time and again whenever I have mentioned getting tired easily it has been said that I need to build my energy up for the summer (and concern has been shown in their eyes not for how I feel now but for how it may affect the summer months). And although I understand this completely, I also wish it wasn't the case - and again I feel that had I been there longer and shown the resilience and energy levels I used to have just a year ago even, then there might be a bit more compassion.

That being said my manager did try to reassure me that if she didn't care she wouldn't bother sending me to occupation health but would have refused to sign off my probationary period, which she did after the intitial 6 month period despite my long absences. Of course, I am only just over those 6 months and if they take into account how many days I have been off sick I don't now if they are allowed to revoke it, does anyone know? I cannot shake the feeling that I am on very unsteady ground - not because I think they can sack me or anything but because if the summer is as busy as we are expecting and my health does not improve I don't know how much longer my body will keep going - I do not know how to work at a lower level as I have high standards and feel even more under pressure to prove my ability when I do manage to work. And let's be fair, I work in a job where there isn't really much chance of changing my role - I am needed to be there, in the office, on the front counter, every day - no part-time, flexi hours or home working to take the pressure off until my health is better (as the endo leaflet I read suggested) it just wouldn't work for a public information post.

*sigh* - I hate the fact that something like this can happen - I never really realised how much endo can affect your life. Before my diagnosis I was a student and so things were more flexible - I could work from home so long as I made my deadlines. Going out to work and keeping up with the rent and other responsibilities (especially after having T out of work for so many months last year and paying off debts from that) add so much more pressure. I also never realised the different effects it has - before it was the nausea and pain alone - now it is the fatigue and general ill health that gets me, the pain, though bad, is nowhere near what it was before and yet I think now my endo affects me more than it ever did previously. And what is worse is that it is such a silent illness - to everyone else you look healthy, especially if you're like me and cannot show vulnerability and just carry on as if nothing is wrong despite being in agony. And it is such an unknown that even though many people respond with "oh I know someone with endo, it can be so painful can't it?!" they never realise how many other ways it can affect someone - and how could they, I mean I never realised even though I had it myself.

Next week we start the 7 day opening hours in our office, which means that as a full time member of staff I will have to be in the office for 4 full days and 2 half days (that's 6 out of the 7) twice a month. We're hoping to change that to one week of 6 full days and one week of 4 full days but even so it does make it much harder than the winter months of 5 working days. I'm gonna need all the strength I can get - which is why today we did nothing but lay in bed the whole morning and then watch the extended version of The Fellowship of the Ring. And for once I didn't feel like I should be doing more.

Monday, 23 March 2009

Occupational Health - should I be worried?

I had the usual "back-to-work" interview with my manager today - you know the ones you do when you've been absent where you fill out loads of forms? I've had so many of these since starting this job it becomes very disheartening and when you have to note all the past absences for 3 months and 5 months (and I've only been there since last August) you REALLY start to feel down.



I hate being ill so often - these days it's normal for me to feel sick, have cramps, have a stinking headache or just be exhausted but I drag myself into work regardless - and I'm pretty sure most people know this, although I think they have now become so used to it that they don't even realise I'm feeling rough anymore. But then along comes another illness and WHAM it gets me because my immune system is so low and my energy levels almost non-existant. And then I can't work. I hate it.


But more than that it worries me - I know that it is not great to miss lots of work because a) I've only been there a short time and b) it puts extra pressure on my colleagues. So imagine my horror when this morning my manager told me things like, "the summer is coming and we can't afford to keep getting casuals in to cover your absences" and "it's not fair on the rest of the team when you take time off in busy periods" and "I'm not telling you off... but..." (ok the but was silent but it was definately intoned as far as I was concerned - there was a real feeling of disapproval). The worst part was when she said it had been noted that I was spending a lot more time in the back office than on the front counter and was that because I had lost confidence in my ability to deal with the public... um NO - I have told her on several occasions I hate doing accommodation bookings but I seem to spend more time doing them than my actual job because I'm the only one who seems to have a clue about them and so get lumped with the job. I'd much rather be on the front desk and thought I'd made that clear - I mean I don't shy from things I don't like I hate accommodation but I do it nearly every day. Conversations like that make you feel really little.

So now I have to see occupational health because HR have flagged concerns about my absences. I have been expecting this since October to be quite honest and it was more the way my manager spoke to me and addressed the issue that annoyed me than the fact I have to see occ. health. But I am a little worried - is this going to make things better or worse? My dad reckons it'll be good because I'll actually be speaking to medical specialists who will know about endometriosis and the things I've tried to ease the symptoms. They may even, I hope, turn around to my manager and fill her in on the facts. I mean seriously this is a woman who had a hysterectomy due to endometriosis herself and yet she was shocked when I told her I feel sick regularly and doesn't seem to get that the only reason I am struggling is because of the effects of the condition or rather she doesn't seem to get hard I have to fight just to keep up with everyone else in the workplace.

Has anyone else had to see occupational health through concerns over their absences due to endo or any other ongoing condition? What was it like - was it positive or negative? What should I tell them and how can I make sure it benefits me as well as the employer? I cannot help the tiny voice in the back of my head that says although they cannot get rid of me on health grounds they can always look for other reasons... I'm probably over-reacting completely but it does worry me.

Sunday, 22 March 2009

Sacred Life Sunday - Faith

I've been meaning to do a Sunday post for ages now but never seemed to get around to it. But then, since putting my poll up, 5 out of the 6 voters so far chose "Spirituality" as something they would read - something which shocked me slightly and yet I wonder why it shocked me because spirituality and faith is such an important thing to people.

I guess I just assumed people would not want to read too much or rather I feared talking frankly about it because of offending someone or coming across as "pushy". I've spent a large amount of time over the past few years splitting myself in two - on one hand I was a highly spiritual person, devoting much of my time to exploring my faith - yet on the other I was highly secretive because of wanting to avoid confrontations regarding it. When I was a student at uni you couldn't go anywhere on campus without seeing a poster or passing someone handing out flyers or even being caught in the midst of the "mission week" of one of the religious groups or another. And sometimes I just didn't want to have to deal with that, because their whole "mission" was to convert me, rather than meet me in a central place and actually discuss faith. I got fed up of being preached to and I avoided these people like the plague.

I think that this is a sad thing because faith and spirituality are two of the most important things in my life and I know that I am not alone in this. But so often we become so defensive (I know I have done on so many occasions) because we do not like to have our faith questioned - it is hard! And yet recently I have been finding a fair amount of peace, joy and excitement in really questioning myself and saying "well do I actually believe that or am I just following the party line?"

My faith has helped me survive so many things over the years and it is my faith that keeps me going when times get rough. So many times the hardest thing for me was to get out of bed in the morning and get going. I have felt trapped by financial insecurities, constant assessments, and illness - oh the illness that has been the worst at times. I would go months having one thing after another and being dragged down further and further until I had no more energy left and yet I had to carry on. And I know I am lucky never to have had anything life threatening or that truly affects my entire life, but between the endo and a seemingly weak immune system I would feel my energy just being dragged away from me. These were the times when my faith supported me.

When I went into childcare finally after years of study I thought my dream had come true. I had always wanted to work with children and I was finally doing it - but financially I couldn't cope and that immune system of mine was shot entirely. I left for a while but again found myself coming back into it and this time all the doors were opened for me - I could fast-track to the top. But again finances and health stopped me and I was gutted - why couldn't I do what I loved so much? But you know what, I love my job now and although I know I will not want to do it forever, I feel like this is part of the plan. More and more I feel as if I am being led somewhere and all of those times - the struggles at uni, the pain of illness, the fear of not making next month's rent - all of it is leading me somewhere. And more and more I am finding it easier to surrender to that. When I want to give up and say "no more" my faith comes bubbling up from deep inside and says "just hold on, you can do it" and I can.

This doesn't mean I find life easy but I truly believe that my suffering in whatever form it is, is helping me prepare for something I am meant to do in the future. For example, I find I have far more compassion for others who are ill because of having suffered myself. I also know that I cannot know exactly how someone feels and how lonely it can be to feel ill, so I try never to say "I know how you feel" but rather to think about what I say and let them tell me what it is like. This has made me a far better support worker and carer then I possibly would have been. And the journey I have been on from absolute fear of discussing my faith through to being pleasantly surprised that we're not so different after all has taught me that the only way to dispell fears on both sides is to openly discuss things.

And sometimes my suffering is because I do not listen to my heart and choose to try things my way instead of trusting that there is a greater plan at work. For example, even though it broke my heart to leave childcare I know deep down that I was in it to fill the space in my heart that loves children and wants to be around them and that I was actually trying to make up for the fact I want children in my life and am impatient to wait until we're ready to have a family. But I didn't care about that - I just wanted to be there. Now, however, I realise that leaving childcare has offered me many more opportunities for both the present and the future - I have a lovely new home I wouldn't have if I hadn't left childcare when I did and met a particular colleague and I am learning skills I can use in the future to offer us a better standard of living. If I had continued to ask "why me?" and not accepted there was a greater plan at work I might have chosen to stay in childcare (I almost did turn down this new job) and then when I was really ill with the pseudo-menopause I'd have most likely lost my job rather than having the great support I had from my new employer - support that I continue to get today. We would also still be living in that small, damp, noisy flat instead of this beautiful village house. Ultimately my faith was what helped me make that decision - faith that the opportunity was there for a reason and the reason for my illness and our financial problems at that time was to make me go looking for that opportunity in the first place.

So today I am thankful for faith - and how at the darkest times it can lead us forward, and in the brightest times it celebrates life with us. Whatever you believe I do hope that it brings you happiness, peace and security. Have a lovely Sunday.

Amanda xx

Tuesday, 17 March 2009

An update post of allsorts

Wow I've been offline for weeks and now I'm in mega catch-up mode. So in order to stop me coming on to blogger every single day I'm just going to do one big update post - so please excuse the randomness.

The new house
I was planning on taking some photos of the house in the beautiful sunlight today but it seems to have taken to hiding behind the clouds so I can't update you on that. Then I was going to make some new cushion covers but couldn't decide how to do it. Then I was going to make my first attempt at a quilt but needed to wash the fabrics first. So I'm back online catching up whilst I wait for the washing machine to finish. So for now I'm going to leave you with some photos of the garden - just a few as I have so many I can keep some for before and after pictures later on.

First we started by covering and filling the boxes my parents brought for us to grow vegetables in. These are larger than your average stacking boxes as they are old ones my dad managed to get years ago. As you can see they were a hideous blue colour that just would not sit well in the garden, so my mum came up with the idea of wrapping them in green garden bags. But because the boxes were so large the bags didn't quite cover them, so a few bits of blue still peek through.
Once they were covered and filled with compost I got to planting seeds. I helped my dad plant his vegetable seeds in his garden couple of years ago but doing it in my own garden was so much more exciting (and scary because I so want them to succeed). My dad laughed at all the photos I took during the day but my mum reminded him of how proud he was of his first garden and home-grown vegetables and how she has the photos to prove it! Good old mum, eh?
We planted loads of seeds and have some left over to replace when we pick some of them (say the radishes) or to keep for next year. We planted: parsnips, beetroot, radishes, leeks (I spelt it leeeks on the label I was so excited lol), onions, spring onions, long carrots and small globe carrots, courgettes, tomatoes (a variety that will grow well outside in a grow bag), runner beans (to be planted outside after the frosts have gone - same with the tomatoes that currently sit on our windowsill), and strawberries. There is also an apple tree in the garden which I know had a fantastic crop last year and as we managed to get a free grow-bag yesterday we are planning on buying something else, preferably more fruit, to add to our home-grown goodness.
Here are the strawberries - well one plant - we managed to pick up two varieties by mistake but that is just as well because this one apparently fruits much earlier than the other one so we will be able to enjoy fresh strawberries (even if just one of two) at different times of the year!

After planting the vegetables we then planted pansies and primroses in the hanging baskets and the remaining ones along the front of the house amongst the daffodils and croci. Tim got an action shot of me wearing my dad's sunglasses (Tim broke mine by standing on them during our move so he still owes me a new pair lol). This reminds me of when I used to be underweight and tiny and how I'd look like a fly with big bug eyes if ever I borrowed my dad's glasses - thankfully I now have a slightly fuller face (even if it is still quite long and thin).

After that my dad and Tim (who was feeling a bit worse for wear having had a bit too much alcohol the night before - he actually didn't drink that much but it reacted badly with his antibiotics and he threw up loads poor darling) had to come up with a place to stick the bird box. We had planned to put it in the apple tree but then Kitty climbed up the trunk and we realised that this was NOT an option. So they decided to hang it on a plank of wood they then nailed to the top of the trellis by our shed and hear another tree we hang peanuts from. A blue tit went in to investigate that very same evening so we are hopeful we may have babies this year.

Kitty, however, having shown off her climbing skills then decided to lay in the middle of the lawn and bask in the sun whilst we did all the hard work - look at her, butter wouldn't melt and all that!!

This blog

I cannot decide whether to change my blog or not - when I started this blog it was an experiment, I didn't really have anything I particularly wanted to focus on. I loved reading family blogs and craft blogs and esecially homemaking blogs but I didn't really have anything in common with any of them. I've tried several blogs in that time - a few for my poetry and kids stories and some spiritual ones but this is the one that lasted and gradually I developed some friends who popped by. When I started blogging about endometriosis I discovered a lot of new friends but I didn't want to just have an "endoblog" because I still love sharing things with homemakers and crafters. I do not have much time to craft and make my house a home but I still enjoy sharing with them.

I also had a fairly successful Reiki blog but it became a challenge to keep it up - somebody else paid for the hosting and I felt I had to blog regularly (which I also felt here for quite some time) and I also felt it had to be worthwhile, not just random thoughts. I took a break from the Reiki blog ready for the move and now find the hosting has run out and I am still considering whether I want to get it renewed or not... part of me doesn't want to lose all the work and effort I put into it and I probably should have saved copies of what I put on there on my laptop but a bigger part of me feels it went out into the world and I don't need to hold on to the past. The older I get the less time I find I have and I just can't keep up all these online projects I could before and I don't like feeling tied to them.

Having said that I do love my blog here but I don't want to be tied to it - I need to remember it is an outlet rather than something I need to keep up to date all the time. There was a time when I was about the leave uni and after I graduated that I desperately wanted to be like so many of my blogging friends and work from home - but it never worked out - I never had the financial stability to do that (we barely survived last year when I was the main breadwinner). This week I am actually feeling quite down - although I love my job I have just become so weary through all we've been through and although I hate to admit it I have less energy and stamina than a lot of people because of the continued toll on my health and it is just so difficult to keep going - it has come to a head having spent some time at home, in the garden and seeing how beautiful it is and how much I am missing by being out of the house 12 hours a day and knowing that come April I will be working 6 days out of 7 every other week (2 of those days will be half days so I won't work more than 37.5 hours but the rota system means I am out 6 days a week on my weekend working patterns and the buses make my days extra long). This surprises me because when I started working there I realised I loved my job so much I felt I'd never want to leave, even if we had kids - but now I realise however much I love it, were I given the option to cut my hours and stay home more I would take it. I'll probably feel different again after my lap and when I get my energy levels back up again because I think it is just the exhaustion speaking right now.
So I really don't know what to do regarding the blog - do I keep it as a general blog - one where I post about absolutely anything in my life (after all "dream of living" is about life itself) or do I choose to just go in one direction... another thing that has been on my mind is that even though I have let the Reiki blog slip lately I have been doing a lot of spiritual seeking and have been talking in great depth to a Christian friend of mine about how "new age" beliefs and Christianity are not as different as they may initially seem - I have actually personally finally found the peace I was looking for - the fact I can choose to accept Jesus in my life without lying about who I am because I am not able to close my eyes and heart to new age spirituality yet I always felt the draw of Christianity - I never saw the way they could work together but now I do. My friend and I were talking about how there isn't really any literature out there about this - or rather there is but it is always very biased - one side is always showing the faults of the other and this happens from both sides! My friend then said I should write something based on my own experiences and although I don't feel near qualified enough to do this I have actually felt for several years now that my experiences, my searching for the connection between the two and the feeling I got when praying/meditating was that I was being led towards doing something like this. I didn't want to - I actually feared it for what it would bring into my life, but now I feel more like I want to express what I am finding out. That may sound totally presumptuous on my part but it is definately something I feel deep inside.
So again I wonder - do I bring spirituality to my blog? It is a deep part of my life after all. Or do I start another blog, one that combines new age and more traditional spirituality together, rather than one focussing only one one aspect - that of Reiki. Or do I not bother blogging about this at all? It makes more work for me - but writing is like therapy to me, I love to write. In fact a couple of years ago I starting handmaking books of my poetry but even then I separated my spiritual poetry from my other poems for fear of offending people or having questions asked - I wasn't ready for it. I wanted to build a life out of my writing - I wanted to inspire others as I had been inspired... I even held an online writers' group to inspire those who feared writing because they had been told previously they couldn't write. However much I love my job and have loved a lot of my roles I have always felt writing should be a part of it - in fact my dad is convinced I will publish something one day and I regularly had teachers commenting on this fact too. Very strange, but true. But at present I have to work to survive and I am so tired at the end of it - do I take up time writing more because after all it is pleasurable to me, or do I focus on other things... it's a hard decision for me to make. I would actually appreciate any comments from you guys about what you would like to read or what you think I would be good at. I may start a poll - in fact if you see a poll on m blog, please do take part and/or leave me a comment about this. There is so much I feel I have to give and so much I would love to write about but finding a direction is hard - do I focus on spirituality, endometriosis, home-life... or do I just write about whatever inspires me in the moment?
In fact I think I will go and set up a poll now - so please do take part :o) After that I am going to sit and cut out the articles from out Country Living magazines I have saved and put them into ringbinders in a style I will enjoy going back to again and again. I love creative projects and this is one I have wanted to do for months but never had the time for. Then hopefully tomorrow the sun will be back to its shining and I can sit outside and start that quilt!!
Have a lovely day
Amanda xx

Monday, 16 March 2009

Compassion

I promise I will get a few more pictures of the house and garden (scroll down for my last post to see the first lot) up over the next few days as I know so many of you are dying to see them (and I have LOADS because my parents came down this weekend and helped us tidy the garden and plant vegetable seeds). But as March is Endometriosis Awareness month and I have missed a big chunk of it by being offline and made some really good Endo-friends just before being turfed offline I want to write a post for them. (Of course anyone can read it!!)

I haven't actually got a single topic in my head so this may be a bit of a random post - but sometimes that is the very nature of illness - random! Take for example the fact that last month, during our move, I had the worst cramps I have had in a long time. Oh my God I kid you not, I was left in our flat trying to pack up the last few bits whilst in agony and trying to keep a brave face because Tim's parents were there to help us move and I knew we had to just get on and do it. As it was the move took us several weekends but that was the one weekend we had help and needed to make the most of it so the remaining weekends when we were on our own we had a lot less to do. I swear all I wanted to do was curl up in a ball and die right then, not pack. This month, however, despite having just had a nasty bout of flu which led to a sinus infection and a course of antibiotics which I would have guessed meant I would be run down and feel it more I actually only had one day of real pain and then the odd twinges - and even that one day wasn't as bad. Weird, huh?

But what is even stranger is the fact that this month I was so incredibly thirsty I felt like my brain was about to shrivel up because it must be so dry... have you ever felt so thirsty you feel like you must be so dehydrated and you think you can actually feel that in your brain? I know this sounds weird and I would have chalked it up to having been ill as well but it's not the first time this has happened. It doesn't happen every month and never really happened before last year, but when it does it doesn't matter how much I drink I just cannot quench my thirst and end up gagging for a drink whilst thinking "I can't drink another drop or else I may be sick because it's all so tasteless now and my stomach might burst". And this is even stranger when you know I usually don't drink enough because I don't seem to feel thirsty very often and have to consciously make myself drink to ensure I get enough fluids in me. Does anyone else ever suffer from this?

I don't know if it's something I need to mention to the doctor or not but as I haven't got to go see him any time soon and the next time I'll see a doctor it will be for my laparoscopy in May I don't think it'll be the right time to bring it up. Talking about laparoscopies, I just wanted to bring a friend to your attention (unless you follow her blog and already know about it). My Journey with Endometriosis is due for a lap very soon and so if you could keep her in your thoughts and pass on your best I would appreciate it and I'm sure she would too!! And whilst we are on the topic of keeping friends in our thoughts, another of my friends over at Ready Go: Battling Endometriosis is having a truly difficult time right now with diagnoses and different doctors and I would also appreciate support for her as well. Support is a major thing when you are dealing with anything challenging in life - be it a chronic illness or a major life change or even just a few rough days. I often find myself missing my friends and family who although living only a couple of hours away are still too far away to just pop by for coffee and a chat. Blogging offers us a chance to meet all sorts of people who know exactly how we feel and although I find myself having to work hard not to let myself spend all my time online and actually get out and actually enjoy the beautiful home we now have, I do find blogging such a support. Even knowing that despite the fact a lot of my endo-friends are facing far harder times and diagnoses than I am they still love and care for me is amazing - sometimes I feel bad for moaning when I know others suffer far more but then I realise that this mindset does not help me at all...

Let me explain... I love to care for others and have volunteered on camps and even worked in care homes and nurseries and adored my job, just so you know how much I love to care for others! But sometimes I find it so hard - I get bitter because I feel so rough. I find it difficult to take time off work when ill or say "no" to friends and family or even strangers when they need something and I know I really need the rest. I am torn between wanting to show the world I need its help and wanting to hide my weakness from the world and act like nothing is wrong - I find being vulnerable HARD! I think this related back to my childhood and teenage years... as a child I was constantly hurting myself - I was accident prone and could fall over nothing... when I was 17 I was diagnoses with hypermobile joints which meant I really did fall over nothing because quite frankly when an ankle or knee joint just pops out of place slightly it's very difficult to stay upright!! But for years I never knew my legs shouldn't do this and so I just thought I was clumsy - so I learnt not to make a fuss because people got fed up of me falling over so often - well maybe not fed up but when you've had major head injuries and lots of A&E (ER) visits, when you fall and scrape a knee it becomes no big deal! Then as a pre-teen I developed a fear - a true phobia - of being sick and related eating with being sick so developed an eating disorder and was referred to the hospital as I was clinically well underweight. I never told anybody why, I felt stupid, so I dealt with this phobia for years on my own (I developed it aged 10 and didn't tell anyone until I was 18 and although I had overcome a lot of it by then and was a normal weight - in fact I was slightly overweight because of Birth Control for my painful periods - I still suffered and still do sometimes have to fight hard to stop the fear monster catching me). Even at the age of 10 I couldn't show my vulnerability and this phobia/eating disorder is perhaps by its nature something that taught me to be secretive about how I feel. Finally, at 13 I started my periods and developed such awful problems that nobody wanted to hear about, finalising my inability to share how I felt.

Why am I telling you all this? Well this history has made me bitter - I have held so much pain inside I have never learnt to let others support me when I need it - even if they have offered sympathy to me I have turned it away... and then regreted it dearly. So, when I get really down, however much I want to support and care for others I can find myself becoming bitter and hard because *I* do not get that which I so crave. It is a big trap I set for myself and I suddenly realised recently that until I could learn to be compassionate to others despite being ill myself I would never learn true compassion - it is easy to be kind when you are happy, but to be kind when you are miserable is a whole other ball game. Once I realised this, in true tradition, life threw me a chance to test it out... T and I both fell ill with the flu and despite feeling like crap myself I actually got out of bed and looked after T who was suffering so badly the poor boy. And do you know what - for once I did it without bitterness - I actually cared for him with my whole heart and never once thought "I could do without this because so much happens to me". It was a new thing for me because I realised that if I could feel this way then maybe that is how others felt all the time and that I shouldn't feel guilty for moaning when I felt rough - others may be worse off than me but it didn't mean I couldn't feel sorry for myself too. I hope this makes some kind of sense - it is something I have dealt with - this guilt - for a long time and now I am learning that I don't have to live with it.

I think that is enough for now - not all that endo related yet it is in its own way! T and I have the rest of the week off together and the sun is shining so we are planning on spending a lot of time enjoying the garden. I hope you all have a wonderful week and I look forward to catching up with you all.

Thursday, 12 March 2009

Our New Home


Here it is! Sorry about the long wait you've all had in seeing this. We've only just got our internet connected at home and both T and I have been stuck at home these past two weeks with first the flu and now sinusitis (meaning we're now finding the joys of antibiotics *bleugh*). I made it to work this morning but had to come home halfway through the day. We're a bit sick of being sick now and looking forward to my parents coming this weekend to help us set up a vegetable garden.

Because of this we haven't got the house sorted as quickly as possible and so I haven't taken photos inside yet - but let me introduce you to our beautiful surroundings... most importantly the church that sits right opposite our house.



And just so you don't think I am exagerrating about how close we are to this - here is a photo of our house from the graveyard (which, incidentally I walked through one night after getting off my bus a stop too soon - let's just say I'm not walking through a dark graveyard alone again any time soon - it was a bit creepy to say the least).



Do you see our house, behind the bush? If that's not enough proof for you - here is the church view from our meditation room...



Isn't that just perfect? I am so sad we will only be living here for a short time but am ready to make the absolute most of our time here!!

One last thing about our new home I will introduce you to this time (and I promise more will follow when I feel a bit better) is the neighbourhood cat (who we are told by the owners is called "Kitty" hehe). We don't know who Kitty belongs to but she certainly enjoys coming in to see us. Nearly every time we open a door she runs inside the house (and sometimes straight upstairs meaning we have to leave the office door closed at all times to protect our hamster!!) She loves to curl up with us and has mighty sharp claws she "knits" our legs with when she is happy - oh but she is so happy we don't mind. Here is T and Kitty having another one of their cuddles - T is quite besotted with her - but not so impressed that I have cottoned on to this and insist on getting evidence - see the face he is pulling in the photo hehe


I've loved not being tied to my computer all the time and am planning on spending far less time online so it may take me quite some time to catch up with you all - but I will catch up as I do think of you all lots.
Take care
Amanda x