When it’s alright on the outside.

This is the inspiration beind this particular post. This picture came from Facebook as so many do but in particular advertising awareness for Crohn’s & Colitis.

It got me thinking about just how many people I might know who are dealing with an invisible illness. The ones where it does not show, people who we are sure they are alright because they don’t look ill. It occurred to me how  almost everyone we know fights a battle of some sort.

It could be cancer, mental health, abuse, addictions, or a physical illness or disability. It could be anything at all.

It is very easy to not think about what other people might be going through and just react to a comment, a look or an emotion but in a judgemental world that we are living in, just take a moment to think about it before your own assumptions take over. Some fight it all alone whilst others can have a whole network of support. Some simply cannot cope and will shut down hoping for the storm to pass. Some will talk about it whilst others will not everyone is different.

Respect those differences but if you know someone who has is coping with an illness invisible or not, just a small gesture to show that you are thinking of them, or that you care can mean the world when it all gets too much.

I know we have just had the season of goodwill and you might be feeling that New Year warm fuzzy feeling but can we extend that around the rest of the year and it might just start to make a difference in our lives. I’m not asking for world peace, after all who am I to ask?

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.

 

O Grande Amor, the song of stress.

Stan Getz

I simply cannot explain it.  It’s bizarre but I had to listen to this fantastic album again yesterday to find out that this is the name of the song which I have noticed that I hum to myself in times of stress.  I had mistakenly thought it was another on the album, which I catch myself humming when things are getting all too much.  It starts off as an unconscious thing, but then I realise and it is like an old friend, immediately calming.

I first recall the regularity of humming it whilst walking through the corridors of the cardiac unit with my father, when he returned to see the consultant after having a heart bypass. But it has been with me far longer than that, occasionally I attempt to sing parts of it too.  I have owned the album for many years, since 1998 when I began to buy CD’s more often than cassette tapes. I have also found that after arguments it also mysteriously appears.

I have no idea as to the why?  I am unable to shed any light upon why of all the music I have heard over the years and grown up with, this is the one which returns and why there is one at all. Perhaps there is some deep seated reason I have yet to find out, but  I do love the song and I know that I love listening to Jazz music.

Stan Getz & Joao Gilberto – O Grande Amor

Family Time with My Siblings

This week has been an interesting one, I have seen both of my siblings, part of my family and I am feeling loved, I hope that they do too.

I went out with my sister on Thursday for several hours, just the two of us in her car, she is a new driver and wanted to get some practice in now that she has a car. We drove to the shops and both she and I had places in mind that we wanted to see although she did not have the address for hers, we went in that direction. Stopping at the shop for some car supplies, we munched on donuts in the car park of a store before setting off. They were the best donuts I have had in years, light and fluffy with just the right amount of jam. They melted as they hit your mouth and were really enjoyable, leaving the obligatory slightly sticky fingers. A clean up and we set off on our little road trip. I loved the afternoon and evening we spent together, it was just lovely to be ourselves, with no one else around, driving through the countryside along country roads, in the sunshine, the car full of fresh air talking about all sorts of things. My partner called to make sure all was going well and asked us how Thelma and Louise were doing today, it made us both laugh. I loved that we could be totally natural, no-one to judge us, no-one to interrupt us either. We arrived back in the evening tired and happy and enjoyed a meal together.

Over dinner she gave me a wonderful compliment, she said to my partner that she has always seen me as always demure and ladylike and seemed to be able to remain calm, she admired me for that. I told her that I had made a conscious effort to be that way, it didn’t come naturally to me. But there is fire within, we discussed that too, that I am not one to be pushed. I will only allow it so far, she said that she had only ever seen me lose my temper twice. (I didn’t ask for details) I am not proud of letting rip, it takes a lot for me to do that. My sister although like me in many ways, is much more fiery, she will say whatever comes into her head and blow the consequences, it has such an effect that she often has no recollection of it afterwards, the steam and the words have gone. Often they leave their mark elsewhere, but once they are out in her mind they are gone. As she set off later that night, we agreed, as we often do, that we should spend more time together and hope to see each other next week as well.

I saw my brother yesterday, it was the first time we had actually met up in about a year. We had so much to catch up on, despite regularly speaking on the phone, it is wonderful to hug him and talk with him. He is working abroad these days and returns for short trips in between his contracts. I was physically ill and couldn’t see him last year when he arrived back, so yesterday we started early and he arrived in the afternoon, staying for lunch and dinner with us. It was great to share some stories, hear about his travels and that he is enjoying getting out and about with his camera he showed me some great photos he’d taken, he wants to do more of this, I suggested Instagram as he goes.

One conversation with my brother yesterday I mentioned to him that I am writing a blog and a book. He asked what it is about. I told him many things, It contains photographs, memories, stories and so far has covered many subjects, such as Invisible Illnesses, He looked as though he did not know what I meant, I explained, Depression, PTSD, Endometriosis. He seemed a little shocked, I told him of my plans to publish a book of poems this year. I have the poems, people are reading my blog and poetry and I have a twitter account now, as of last week with followers there too. Thank you to all of the above on and also being joined by my 50th follower, athling2001 on the blog, another personal milestone for me this week.

He asked me what my own plans were, I told him that although I do not currently have a paid job, I have been writing for some months. That it started out as a recovery thing for me, but I used to write years ago, poems and things and felt the need to be creative once again. I tried to draw, and paint, and make things, but writing seems to have taken off in a big way for me and comes naturally, he had been speaking to a lady we both know, who is currently writing children‘s stories, she apparently told him of her night writing and the times when there is nothing, but then it can return in floods. He laughed, I told him yes, it is real. It has given me the opportunity to express myself. The REAL me. I found myself explaining to him that for so long, I had been stifled by people around me, who expected me to be a certain way. I was facing an inner battle, yes, there were times when I wanted to shout at people and tell them that they were behaving badly, but I didn’t. I held it all in for years and suddenly, I couldn’t anymore. I admire the people I know who can just shout about it straight away and it’s over. I am not one of those people.
I carefully consider the possible repercussions of my words and actions, over think things and then think better of saying things, wise after the event. I should have said…. If I were to do it over again I would do/say etc, you get the gist.

Last year I stopped holding it all in. A counsellor helped me realise that it doesn’t solve things, to keep them put away. I was urged to find an outlet, give myself some me-time on a regular basis and find out what I needed and make sure that I got some of it. It was an eye-opener, just taking permission to do something for me, for no-one else time alone now and then and I have guarded it ever since. Now I have an outlet, I WRITE. I am not carrying all this emotional baggage around with me, I have room in my head, to think, to plan, to have a future. I may not be rich, I may not have a successful job at the moment, but I did, so I could again. But for the time being I am Happy! I am Grateful for the things I have learned, for the people who have put their faith in me, for allowing myself to be ME again. I might be a new me, but it is exhilarating to find the nice bits, bring them out and cherish them within the new person that I am still becoming. I explained to my brother that writing is quite cathartic, the release it gives is wonderful. He looked quite concerned, as though I may have rambled a bit, I think it took him by surprise. I don’t know if he understood, perhaps he never will.

Sheet Music and Musical Events.

I remember that I am sitting in my Grandmother’s house, at the time when I was learning to play the recorder. I had to learn how to read music. It was the only way I would progress and be able to play in the school orchestra. As a small child, I did not have the lungpower for a proper wind instrument. I had only a small voice and couldn’t quite muster enough puff to play for any length of time. However, my Grandmother persisted with me. She would always help you if you were willing to be taught, laughing as I write this as the reality dawns that I am exactly the same in that respect. You shouldn’t waste your time on people with no wish to learn. If only I had remembered that in the training sessions of my later employ, when others who did not wish to partake, sat looking blankly on, saying that they just, didn’t “get it.”

I remember her running through the notes with me, singing which were which and explaining each one of them to me and where they would be within the piece of music.
Gone with the mists of time I now do not recall any of the knowledge behind it, I remember that I like the treble clef with it’s artistic swirl at the beginning of a piece. Whether it will return or be dragged from my mind kicking and screaming remains to be seen. I had decided that I wanted to learn a musical instrument. The recorder was a cheap instrument for my parents to buy, they couldn’t afford a trumpet, my hands were so small that I probably in truth couldn’t hold one. I could barely reach the bottom hole on the recorder. I had a Hohner recorder, it was black with a cream line around each section where it screwed together and you could dismantle it for cleaning, along with a plastic cleaner like a large needle and a piece of fabric threaded through the top. You pulled it through the instrument to remove saliva deposits so that it didn’t sound like you were just blowing bubbles. I also had a bamboo recorder, which had been acquired from goodness knows where, but my mother deemed unhygienic and spirited away. I think that one had come from one of the jumble sales. My Grandmother For the classes at school, I was required to learn to read music, so that we could play whatever was required for assembly or the forthcoming concerts.

Although I have a love of music, playing an instrument did not come easily to me, around the same time, my parents decided to play and sing together in a band. My father on guitar and them both vocalising, my mother also had a tambourine to accompany them. They enjoyed themselves and would take us along to visit other churches, parties at houses of the people in the church and various places, the songs were religious and they were part of the local Baptist church congregation. They would take my brother and I along. I played a tambourine to join in but I think my brother just sat it out, he wasn‘t one for singing or musical instruments. It was at this time, that I recall they played at an asylum, it happened more than once, but I remember feeling distinctly uncomfortable being there. There were patients milling around and a few “orderlies” standing around listening to them in a room. It seemed to go on forever and as small children do from time to time, I needed to go to the bathroom. They hadn’t finished their song, but I couldn’t wait, so telling my Mother where I was going, they continued to sing and play. I remember walking along the corridor to the toilet, I saw a man was coming the other way. I looked at my feet, attempting not to make eye contact and attempted to walk on past, he suddenly veered towards me and I looked up, at that point the man shrieked at me and clasped his hands to his head, then went off to bang his head against the wall. I ran away as he laughed manically. There was a room with people in further down , a lady screamed out, someone told her to calm down and not to fuss, what on earth were they doing to her in there?

It was quite some distance from the room where my parents were, to the visitors toilets. I don’t think that the organisers had put much thought into it putting us in a lounge away from the usual visitor area. I didn’t like the place, it made me so terribly sad to be there. In this huge and beautiful old building, on a bright sunny day with a wonderful wide expanse of garden outside, where no-one was allowed to play and where supervised people shuffled along the pathways, unable to walk on the grass. A place where despite the singing and praising the Lord, all I could hear was screams and cries. I went to the bathroom and despite my fear of being locked into places, I locked that door. I did not want anyone to come and get me, besides I had to pull together enough courage to make it back along the corridors.

I ran back to the room, clattering along the corridors, I saw a lady curled up in a corner, two nurses were trying to get her back into her room, she clearly did not want to go, she wrestled with them. They asked me what I was doing in that part of the hospital on my own, I shouldn’t be there. I explained that I was going to the toilet. Keep going they urged me and don’t stop to talk. I flew along the corridors and crashed back into the room, the parents were still playing, surrounded by inmates who were now singing along in their own way, rocking back and forth, emitting strange noises. I’m not sure, but think that it did them some good,. I was quiet on the way home. I asked later told my parents that I didn‘t want to have to go back there. I was scared of the people there, they were in the process of telling me that I shouldn‘t worry they were only people who were sick, that we were trying to help. But I was adamant that I did not want to return and told them what had happened when I needed to go to the toilet. My mother berated me for not taking my (older) brother with me when I went. I said, he wouldn’t be allowed in the girls toilet. So after that they agreed that it probably wasn’t a good idea for me to go again. On going to school, the next day I was asked in class what we did at the weekend. I told the teacher, she did not believe that I could possibly have been there, why would a child go to such a place. Surely I had made it up, some of the children decided to be cruel, chanting that I had been to the “nut house” and that my parents must have taken me there because I needed to see a Doctor, and I should have been left there. My sleep was disturbed for some time afterwards, I regularly had nightmares about the place.

I think that after that, my love of learning music waned. I do not remember continuing and being a part of the Orchestra for the school concert. Later I looked at learning the piano, but my parents would not entertain it. It’s a shame since in my earlier years, we actually had a piano. I did teach myself “Do Re Mi” from the Sound of Music on the piano which was held in a room at a church we later attended, it was a beautiful grand piano which had rolls of music which could play fantastic pieces, if you wound it up, I would spend hours in there just listening to it. Someone had donated it to them and it was kept in a room there. I always snuck in there to play it whenever I had the chance. Most people learned chopsticks, I was different. Looking at a page of music, I now only see notes and not a way to play them, maybe I have blocked it all out

Years later, my friend was stationed at the same hospital for part of her nurse training, I stayed well away from the building but did visit her in the nurses quarters on a few occasions.

May is Mental Health Awareness Month. I saw on Twitter yesterday, I think that is why this particular memory came back to me. At eight years old I decided that I never wanted to be put in one of “those places“, who knows what happened there, but the people were so very broken, they would never be the same again. I did not know, nor was it pointed out to me that sometimes people actually recovered from mental illness. No-one thought to explain what mental illness was or that it affects people in varying degrees and takes on many different forms. For many years, I had one view of it, I thought that it was where people “ended up” since there was often talk of suicides there and I certainly did not want to go there or join that club. To this day, I struggle with seeing people rocking, it takes me right back to that time. I do want to try and help, to hold them close, take away their pain and stop them from doing it. Seeing that person rocking years ago, throwing their body into the wall, faster and faster has stayed with me. I did not understand the relief that could possibly be gained from literally banging your head against the wall, later I figured it was as they tried to escape from themselves and the pain that they were in. I have always tried to avoid doing the headbanging, it tends to be a more subliminal thing with me. Years ago, I watched the film One flew over the Cuckoo’s Nest, with Jack Nicholson. Although I could appreciate the acting in it was brilliant, I found it one of the most disturbing films that I have ever seen, it brought back so many of the images from those visits to the hospital which had lain buried for years. There is a stigma, no one wants to be thought of as unstable, deranged or messed up. We all have our moments, some last longer than others. Some feel as though they are insurmountable. Some get help and iron out the crumpled bits, living to fight another day. Some fight their own battles for years, denying they even exist then life slams your head into that wall and you get a wake up call.