The New Me?

The new me…

If I can make it through a 12 hour day without crawling back to bed in pain. I am feeling lucky.

Where I haven’t fallen over, scalded myself, dropped something, hurt myself or stepped on the dog then it is an achievement.

Where when I wake up and look at my phone I can see clearly without the blurred vision and the floaters that cloud my eyes. The headaches which are becoming ever more frequent and lasting longer. Sitting around with a clenched jaw because most noise is too loud. The watch which is no longer worn because the ticking keeps me awake and gives me a headache. The hum of appliances as I walk past them make me feel queasy. A passing odour which can linger for hours, bring on a headache or turn the stomach. An onslaught to my heightened senses.

Where I’ve held a conversation which has made sense and all the words have arrived in their correct sequence to impart whatever I wanted so desperately to say. Without the tears of frustration escaping and emotions running high.

A day where I’ve been able to take a shower and get dressed, because I didn’t fall over in it. Or if I feel really good I don’t resort to using the shower seat and can co-ordinate my limbs without them hurting and shaking and having to sit down part way through.

I don’t wear make up very often, there seems little point I rarely go out at the moment. One essential shopping trip per week usually accompanied since I am often too ill to drive myself.

On a good day when I make food I don’t split the packets on the food I try to prepare sending the contents skidding across the worktop or worse the floor. I am able to make a cup of coffee without dropping the jar and I can even drink it without throwing it all over my clothes.

Sometimes I can manage the weight of the laundry awaiting try to hang it out on the line. Some days I can even walk the dog, who trots along patiently at this new slower pace, nuzzling me to reassure. I can put on shoes, with socks only for an hour because my feet feel as though I am walking over hot stones. My boots are without laces, because I am unable to tie them. They come off the minute I get home so that I can cool them down again, the slightest exertion and my hands are the same. Washing up water hurts and they throb for hours afterwards.

Other days I cannot do these things. I slink back to bed, try to sleep, willing the pain to go, the tremors to stop and my thoughts to make sense to me. I hope that the painkillers work, that things will change for the better. I hope that I don’t choke when my throat goes into spasm and wakes me coughing loudly anything around my neck feels tight, from the inside out.

I have a sense of humour, I guess watching from the outside it might be funny to see some of these things as they happen if this weren’t the new me.

It is not the me that I want to be, or thought that I would be. 

I am hoping that this is the temporary me, one that will improve soon to be replaced with a faster, streamlined and efficient model in the same skin, only skin that doesn’t itch and crawl.

A new me that is not cheated from the plans I have made for the future and the life I want to lead one who has the energy to go out and get it and be me.

When Loved Ones Revisit. 

I don’t know if you believe that loved ones who have moved on to another life visit you to remind you from time to time. I am a firm believer in this. The Robin who appears every day singing its little heart out on the hill whenever we are there. Who first appeared when we scattered some of Kato’s ashes in his favourite spot. It always comes to see us in front of the house, singing loudly to announce its arrival. This year it showed us its new baby, just as we did. We showed it ours and it returned daily whilst we were there. 
Yesterday was the year anniversary of my last accident. When a wonderful surgeon spent three hours stitching my face back together after going off duty. For which I will be eternally grateful. She did a wonderful job. Quite often you can barely make out the scars, the skin has healed very well. I am still working on the emotional ones. It takes time.

Then one year ago today we lost our beloved Kato. It broke our hearts a day we will never forget when we had to say Goodbye. We have been grieving for a year. Yesterday we were talking about him. We often do because we talk about most things and it helps us both. 

As we spoke of him suddenly we were joined in the garden by the most enormous and beautiful dragonfly we have ever seen it was four inches long and just as wide, you couldn’t miss it as it flew over us.

Now dragonflies are known as reminders of loved ones who have passed away.

The dragonfly swooped around in front of us both and swirled around our heads. Roki stood up and barked, which is unusual for him and went over to where it stopped to take a look. It landed on the honeysuckle right where Kato saved the baby bird by letting me know it had fallen from its nest and was trapped in the branches and made sure that I rescued it and set it free.

The dragonfly sat there for about five minutes. It was larger than life and close up it looked black and white with silvery wings. Of course it was. It embodied everything that Kato was in that sentence.

It made me quite emotional to see it. Touched by this thing of beauty. I went inside to get my phone to see if I could get a photo of it, it took a while to see it sitting there camouflaged in the bush but look closely on the middle of the bush as I did to get this photo and you will see it. After I spoke to it, it flew skywards. I prayed that it would have a safe journey and return to me. 

I am sharing with you again today my poem Butterflies and Dragonflies written last year, a short while after he passed away.

https://indiablue.co.uk/2016/09/03/butterflies-dragonflies/

A burst of creativity 

25/6/17 After a week of feeling exhausted with high levels of pain and very little sleep I was met with an inspired moment. So this weekend’s sudden burst of creativity has come about by this….

A small pot of local flowers from my garden which either looked pretty or smelled nice. I thought I might be able to make some pot pourri to send to my friend in Australia as part of her birthday gift and to remind her of home. I miss her even more since she emigrated. Yes I have lots of wild flowers which have grown in the wrong place (otherwise known as weeds) but they are blooming and some of them smell rather lovely too so I’m not afraid to include them.

Unfortunately I then looked it up and found out that you cannot send plant matter to Australia since they have strict laws. So I thought about making her a wildflower bouquet mixed up with the ones from my garden and photographing it for her. Perhaps I would make it onto a notebook so she can write a journal, or get it printed for her and put in a frame. Who knows but on our evening walk we collected more and since it was a rainstorm by the time we arrived home I had to store them in the fridge overnight and so this was made today. 


It adorned my dining table for the day as I wasn’t sure exactly what to do with it next. Send it with blessings to the wind, or make the pot pourri out of it, it does smell rather nice. In the end I have opted for both. 

I was inspired by an artist named Day Schildkret who on his walks collects things and makes beautiful sculptural earth alters from his foraged finds which he photographs. Known as Impermanent Earth Art You can see his work at http://www.morningalters.com I love his work and am perfectly happy when doing my own foraging for beautiful things.

But it somehow set the ball rolling. Last night I wrote up my poems to the pc from the notebooks of my last trip it boosted my morale again finding out that I have almost reached my quota for my second book selection (a further 100 poems) and it seemed to trigger the writing again, suddenly whizzing around my head. This morning I wrote a poem about my friend who has invited me to her wedding next week. I plan to give it to her for a gift and thought that I need to do something else for them too. I am all for a bit of upcycled giftware and have made her a recycled roof slate chalkboard with the wedding couples initials in a logo and the date of their union. The slates were reclaimed from Scotland. I have a few of them I intended to make up for some friends and family or perhaps sell at a later date.


I hope that they like it. 

I also made one for our home which is personal to us. This has become our catchphrase of late since wherever we are as long as we are together it’s home.

It seems that I have been able to write more poetry this week. Not all of it suited to a book, or here but had to be written nevertheless.

The Yellow Mini

It was her first one. Mum’s first car of her very own. A yellow Mini with a Black roof and bonnet stripes. In the brightest yellow that she could find. Yes it was loud and it resembled all of the things she wanted to be. Racy, Daring, Fun and it reminded of her of a bee, which she loved, because it was bright yellow and black.

It would take her to places she had never been before where the only limit was the fuel she could put in the tank. She would pack her bag and drive to her parents, once the caring for them was over for the weekend, she would return to her family. Racing the fast cars along the forest roads with a smile stretched out across her face. She felt alive behind the wheel, with a spirit of adventure, just for that short time.

It gave her the freedom she had so long craved. Freedom from the day to day, whatever the weather. The other motorists smiled as she passed them by. Her happiness beaming like a beacon across her face. She loved that car, for all it represented to her and they had no idea.

The Daily Post – Yellow

 

How Many Do We Get?

A leading question and forgive me for a moment if I’m going to go deep…

I am talking about how many chances to make a new life? Something better than before, or at least different. I am sometimes likened to a cat by those who know me, but I wonder whether I have the nine lives people so often speak of. I don’t know how many chances I have had. I have never thought to count them before or even how many I may have already used up and I’m not going to start now.  For whatever the answer is, I am grateful.

What I do know is that throughout our life we are given so many opportunities to make it different. Some we may miss. It may be that we simply don’t see them at the time. Or that they come out of nowhere and we reach out and life as we know it changes completely.

I want to tell you about one such time in my life. It was 8 years ago (Oh how time flies) this week, just days before my Birthday.

I had prayed so long for the moment, hell I’d even begged for it. The operation which I was sure would change my adult life from the one that had been plagued thus far with pain and illness. Once they had found out that the cause of all this misery was Endometriosis, an incurable condition and I had met the specialist, then he could set about sorting me out finally. I was overflowing with hope of what would come to me in my new life after they agreed to give me a full hysterectomy. The pressure in the past that I’d felt, to provide children to complete my existence was suddenly removed and I could finally move on from it. By just announcing “I can’t have children”, instead of the wistful ” I don’t have children…. yet.” Somehow the weight was instantly lifted and it was just accepted by others as well as myself. It was also possible that since my pain and symptoms were cyclical and my menstrual cycle outweighed the rest of the month, this surgery just might put an end to it in one fell swoop. It was a drastic approach, but I had tried everything else that was suggested and it hadn’t worked, I was by then absolutely desperate.

Of course I had the last minute doubts before the operation because it was so final. But, the pro’s definitely outweighed con’s in my mind as I thought about the opportunity to actually start living and be able to follow some of my dreams without being held back by my condition at last. My partner was a tower of strength and supported my decision all the way, he wasn’t going anywhere he said, we were in this together.

There were moments in the past where I had gone after a dream and encouraged by my partner had gone far and achieved things that I had not thought possible.

I awoke from the operation euphoric. Full of hope for what might come next in our lives, after the three months recovery time at home I would need. Thankful for being given the chance at starting my adult life over again. I was now going to be able to go out there and actually begin to live it! I was also extremely grateful that this time I had understanding bosses who had agreed the time off on full pay that I would need. It was such a huge relief that we did not have that particular stress hanging over us through that.

I healed really quickly on the outside and felt invincible and ready to take on the world. My partner held on tightly to the reigns for a while to stop me doing something that would set my recovery back and I started straight away on HRT patches so that I wouldn’t go into a menopausal state with immediate effect. I didn’t want to go through that on top of it all and since I was young I wanted something that would protect me from the brittle bones often suffered post menopause for as long as possible. I am still using them.

So how do I feel 8 years on from this?  Did my new life begin? Was it as awesome as I thought it would become back then?

Well, yes I got a new life compared to the old one. It started to be like most lives, it’s been a pretty mixed bag.  Not always awesome, it has been filled with ups and downs, we have been sick and healthy, jobs have come and gone. I have lost people and loved ones along the way. I have fought for what I believed in, I have tried to remain strong even when I did not think it were possible.  I have often felt as though I am at rock bottom but I have had my loved ones beside me along the way but most of all it is not over yet.  There is no “fat lady” singing yet.

I have gone sometimes off at tangents over the past few years, not really knowing where it would lead but I want the other chances which might be open to me.  A life can be long or short, we have no way of knowing which of those we will have.  As mine continues I will look for the opportunities in the hope that they present themselves as often as possible. I hope I will find them, at the corner of every street, on every day that I am lucky to wake up and to breathe and in every person I am lucky enough to meet. Yes, I do see those things as blessings, sometimes in disguise, but experience is gained from every encounter.

I haven’t yet worked out for my purpose is for this world, I feel as though somehow I am being led to help others.  I am not sure of the direction but I am certain that I have a place and I belong here and I want to make a difference, somewhere to someone.

 

Turning Over a New Leaf – My Take on It.

Kara Post Kennedy – Turning Over a New Leaf – Open Thought Vortex

Having just read the above post and seen the question “what change that you want to see are you now deciding to be?”

I was struck by this and also kind of stuck for an answer. It is a New Year, but are we supposed to have it all figured already?

It takes me longer than that to figure things out, maybe I should have begun to figure it all out much earlier.

So what do I think this year will hold for me?

I like so many others I’m sure, am hopeful that we as a couple will become healthier, even happier and more prosperous, perhaps a little slimmer too as I seem to have put on some extra pounds.  Maybe it’s because I cooked Apple Crumbles, with our apples from the hill. To allow us that little taste of Scotland for Christmas, which we both love and we have just finished the last of them.

I hope that I will get a great job which will provide everything that we need to survive and maybe give us a little bit more to cover some adventures along the way. I hope that my second book will be better than my first and sell so many more copies.

So as I sat at New Year, stating my intentions, getting them out there, I hoped that some at least might come to pass.

But and this is the thing, If it doesn’t all happen for me then I have made the decision that I will not beat myself up about it as I have in previous years.  I will not blame myself or those around me, most of all  I will not see it as failure if I don’t achieve all these things.  For I am giving my fate over to the universe this year and if it doesn’t deliver, then well then I have to just accept that it just isn’t the right time yet and believe that the better things will come, when they are ready.

This is my new leaf… Allowing myself to accept what good things are to come, to welcome the changes that will follow.

 

 

A Familiar Pain

As I read posts here and there about women going through the endless quest for a child, I cannot help but feel their pain and the suffering they are going through. All those memories suddenly returning of being hopeful that this was the month when my period would not appear early and the tightness in my abdomen and swollen stomach would mean something other than an Endometriosis flare up. My heart goes out to these ladies every time that I read of their torture. There have been two such posts that have popped up on my news feed this week. I hope that those ladies do get their wish and are able to bring precious souls to the universe. I know that if they are lucky enough to do so that they will shower such love upon their miracle babies and praise the IVF treatments they put themselves through to get that longed for baby.

I do not have an IVF journey to share instead I tried everything that the Drs suggested just to try and be pain free and it wore me out. My partner had not expressed a wish for more children so when I was told that we would be eligible for one course on the NHS at a time when I could not have felt so ill equipped to deal with a pregnancy we had a big talk. He could see that I was ill and he told me that from his point of view he had everything he wanted, he did not need a child to be the icing on the cake. He was happy with me so I wasn’t under any pressure to bear children. I thought that when the Doctors told me at 17 that I wouldn’t have children had really done a number on me and I hoped that one day I would just prove them wrong. Alas it wasn’t to be. So as for IVF I would give up my chance and not pursue that route. It felt as though I would be trying to force nature and perhaps someone else would give their child better chances that I could not. You had to both want it so badly that you would go through everything to get there. I thought that I would have made a good parent, others told me that I would. I loved children and in the early adult years was everybody’s babysitter, a nanny and honorary Auntie to so many. There were a few occasions when I thought that I might be pregnant again. Periods were late, just by a few weeks which never normally happened, but then Mother Nature would play her cruel trick once again and I would be left quietly devastated.

I settled into the life we had and the pain of a condition along with multiple surgeries over the years and prayed a lot. That if it were right we would be blessed with a child and if not, then the pain would go away. Over time I asked about more permanent solutions since my symptoms were clearly cyclical and getting worse I was finally given the green light on a hysterectomy having fought to have one for several years. I was told that they didn’t want to do it as I was too young and had no children. They said it would be irreversible and force a medical menopause. I argued that having been told I would never bear children at 17 what were they waiting for, why prolong it any longer? I could have had a life and been pain free before now! Finally someone listened to me. A week before my 35th birthday I was scheduled for a hysterectomy and I thought that my Endo problems would be over. In my mind it really was a case of New Year New Me! The one thing that wasn’t explained was that even that could not heal the condition as it is incurable. Yes it could slow it down ease some of the symptoms but it could come back, as I would find out.

I was in surgery for several hours, they cut me about a lot and as my partner paced the hospital in the snow smoking and worrying about me, as they stopped the haemorrhaging he was glad that I had made it through. As I healed I felt that my life was truly about to begin. Full of hope, ambition and excitement for what might happen next. A healthy and happy future together pain free.

For a few years, I championed the work of the surgeon. I happily recommend him now to other ladies who need to see a specialist for the condition since he is the only Dr I have met who understands it. He had after all enabled my life to start given us me back. There was an Endometriosis support group at the hospital and I used to go there after the operation. I even did a talk and told my story there once. My partner was so proud of me. Prior to the surgery I had often had thoughts that I shouldn’t be here anymore, Endometriosis can do that to a girl,  it was usually when my hormones fluctuated uncontrollably. But then I thought that some people might miss me and they shouldn’t have to. My hormones had a lot to answer for!  It was a huge step to be able to speak there in public at that group and when people came up to me and told me that I inspired them it made the stage fright worthwhile.

I threw myself into my work, getting on with our lives together and for some time felt no pain. I went on HRT within 24 hours of the operation and have remained on this since. Opting for patches rather than tablets due to suffering with irritable bowel for all these years I did not wish to lose the benefit of the HRT. About 2 years went by I think before I started to get those familiar dragging pains back again and I remember asking how it were possible that you could get the same pain when you no longer had the equipment. No-one seemed to be able to give me a straight answer and by then I had been signed off as healthy by the gynaecologist. I also received a letter saying that I was no longer required for smear test screening since I no longer had my ovaries. (Yes they actually wrote that! ) I began to research how on earth I could be getting Endo pain again when I’d had a hysterectomy. In my naïveté I had assumed that that was it and I would be cured. I got on the hysterectomy association website again and checked the forums and to my horror my fears were confirmed. There is no cure! 

In all the appointments after a diagnosis which on average takes seven years, I did not ask. I merely accepted it when I was told by the consultant that “There is no sign of Endometriosis” after the operation at the time that sentence had me doubting my sanity more than I ever had before. I asked my partner had I imagined it all these years and gone through all that uneccessarily? Had the other Doctors got it wrong then? No, he reassured me that it simply meant that he had removed all traces that he could find at the time. So after that I was discharged from his clinic.

The Endo pain comes and goes, in times of stress it flares up along with the irritable bowel and my stomach swells making me look as though I’m pregnant, sometimes adding several dress sizes to my body overnight. It causes pain in the strangest of places and I have no idea whether it requires further surgery. After all, I wonder what else could they take away? Sometimes it is a chronic pain which doubles me up making me shake. Leaving me wanting me to hide away all I want to do is curl up and sleep for days. Other times I get by with rest and painkillers and there are times it stops me doing things that I would love to do. It has had a devastating effect on my sex life. I am not alone, so many other Endometriosis sufferers go through this. Far from giving me the freedom to enjoy sex more which I had hoped for, the hysterectomy was like flicking a switch on my libido plunging it into darkness  where I often can’t find the switch to turn it back on again. It’s devastating when two people who have always found each other the best thing since sliced bread with great chemistry are suddenly just not being turned on so much. We both felt cheated by this since no-one had forewarned either of us. Over the years since then our relationship has shifted and Thankfully we are strong enough to handle the ups and downs and can still light each other’s fires even though it may not be as often as before.

He told me years ago that if we did not have children of our own then we would raise puppies. Our second one since then has joined our family taking the place of the first one who left a gaping hole when we lost him earlier this year. For me that loss was like the miscarriage of my youth all over again. Having your baby suddenly gone can tear you apart as well as open up old scars. It took a while but we needed that unconditional love back in our lives so we lavish so much love upon the new puppy and he is happy here.

Whatever your circumstances. There are some wonderful support groups, on Facebook and other forums now. When I first went through this before my illness was diagnosed I was reliant upon libraries and a disinterested GP who was happy to palm me off, as is so often the case. I knew absolutely no-one else who had these symptoms so felt that there was no one to ask. Most of all you need to know that you are not alone. As a statistic one in 10 women suffer with Endometriosis but it is natural to doubt your own mind when your body is doing unexplained things to you. If you have chronic abdominal pain, or just that something is out of the ordinary with your body and it worries you then please ask your GP. Do your research via these forums and get a second or even third opinion. The social network is a good place to start but you do need to get it checked out by a professional.

If you are UK based and diagnosed or think you may be living with this condition then please take a look at the attached links Endometriosis.Org – Facts

Should you wish to connect with others in the UK please go to Endometriosis U.K. But other groups and locations are available worldwide.  Endometriosis Sisters Support Group – Facebook is  a place where you will find so many people who will inspire, encourage and advise you, based on their own experiences of dealing with this condition. You will also find lots of research articles via Bloomin Uterus Blog

You do not have to face this alone.