What makes me happy may seem like a strange question or title for a blog post, for someone dealing with Ehlers Danlos syndrome, Postural orthostatic tachycardia syndrome, severe dysautonomia and possibly Myasthenia Gravis and all the pain and complications that throws into the mix. However I am happier now with life than I have ever been. Yes I live a life with some restrictions. I don’t get out and about as much as I would like, I do lead quite a solitary existence but I am happy.
There are days where I am not happy, there are days when I would like to sit and cry shouting “why me?” but I learnt a long time ago that it doesn’t get me anywhere and wastes precious energy. If I do find myself having ones of those days ( which are thankfully now few and far between) I accept it for what it is. Even people without health issues have days when they get the blues or worry about the future. Its normal and does not need medication to cure it.
So you maybe asking how did you achieve this zen like state? Firstly I’m not some new age hippie type that meditates for hours. There is nothing zen like about me. What I have achieved and I deliberately use the word achieve because its taken a lot of hard work on my part (without outside help) is acceptance. Acceptance that I can’t work, acceptance that people that I thought were good friends turned their back on me when I got ill, acceptance that some people can’t handle chronic illness and acceptance that the situation I am in is unlikely to change anytime soon. But hey there are always miracles!
For a long time before I got sick I wasn’t very happy. The job I loved, was good at and had done for 9 years was got rid of by the company, I had to apply for a new job or face the prospect of redundancy. I got the new job but it wasn’t the same and although I was good at this job as well, it didn’t give me the same sense of job satisfaction.
Fast forward two years and suddenly out of nowhere I developed ptosis and crushing fatigue combined with muscle weakness. Being on my feet for 36 hours a week was killing me. I asked for help but little was forthcoming, I was rapidly discovering that disability in the workplace is simply unacceptable. For 18 months I struggled on doing a mixture of full and part time hours in a steadily increasing toxic environment.
I felt like every area of my life was unravelling work and home. Days off were spent sleeping, house work, cooking fell by the wayside and landed heavily on my husband’s shoulders. Its fair to say during this time I was deeply unhappy.
I will be honest and tell you that acceptance did not come about easily. For around 3 years after I left my place of work just driving past the building was enough to trigger a panic attack. I was very lonely, friends that had initially stuck by me either drifted away or started to abuse our friendship. Those who used my vulnerability and social isolation as a weapon against me were eventually after much soul searching discarded. I had no energy to deal with toxic friendships and I didn’t have the emotionally strength to be picked up and dropped on a whim.
Because my identity was so caught up in who I was at work, I was lost. I felt useless and an unproductive member of society. I had to forge a new identity for myself, I needed to find my place in the world once again. Initially I started this blog as a way to get my thoughts and feelings out into the world, it became my silent counsellor. I started helping on disability rights issues on Internet forums, due to my own experiences I had become a bit of an expert on the equalities act. What I had found through my own experience was it maybe laid down in law but it doesn’t mean that employers understand it, let alone implement it. I found that I wasn’t alone in being cast out of the workforce and many others were struggling too. Helping them gave me a feeling of self worth and gave me back some of that job satisfaction I had been missing since I had left my place of work.
I started writing a novel which has been on hiatus for a few years now, but I am hoping to get back to it at some point. As I have said before my health isn’t in a fantastic place at the moment and as I want to cultivate an audience for my blog I need to concentrate on this.
What I have found since becoming ill is material things no longer mean that much to me. I take more pleasure in simple things because I have the time to appreciate them. My happiness is no longer reliant on how well I do my job ( I’m medically retired), how much money I make, what designer items I own. That was a massive change for me as I have always had expensive tastes!
So what makes me happy now?
In no particular order!
When I was working family came quite low on my list of priorities. It sounds a terrible to say but I really did put work before everything else. Now family means so much more to me, without their support I don’t think I would have made it through the last few years. My mum helped me so much during those first few years, coming up and looking after me, fighting the Dr’s for me because I was too sick and too tired to stand up for myself. Travelling across the country taking me to specialist, shes done it all. My sister also helped me to adjust to this new way of living. She became ill a long time before I did and she became a sympathetic ear when I needed it. My dad has also taken me to hospital appointments, popped in to see me to check I’m OK and has been very supportive in my writing endeavours.
I love it when we get together as a whole family and spend time together. It doesn’t happen very often as they live 60 miles away from me and I really can’t travel. One of the happiest days of my life was my 40th birthday, when we all spent the day together. Its so relaxed and easy with them and great fun.
We talk on the phone, text and skype on a regular basis but actually being together beats all those things hands down. Everyday I thank my lucky stars that I have them.They make me very happy.
My Husband and my fur babies:
My husband is my best friend, in so many ways we are very alike and yet in so many ways we are entirely different. We adore one another and love nothing more than just spending time together.
When I was working we rarely spent anytime together, we were drifting along not appreciating what either of us had. When I got sick it would have been so easy for him to walk away from it all and continue to have the life he expected to have when we said our marriage vows. Instead he stood up and developed as a person, becoming more mature and even more caring.
I love spending time with him, he makes me happiest of all.
My fur babies are my everything. Two of whom I helped deliver into this world. Mollie, Frankie and Willow have helped me cope in more ways than they will ever know. In the dark times and there were a few in the beginning they were the only thing that stopped me doing something stupid. I knew if I was no longer around, my husband would not be able to work full time and look after them. They would end up being re homed which would break his heart all over again. I’ve spoken about how nurse Frankie looks after me in other blog posts. They all have different characters and make me happy in different ways. Without them my life would be pretty empty.
Before 2007 I considered myself lucky, I had lots of friends and a couple of really close friends. When I left work it became crystal clear that some of these close friends were not who I thought they were. I had simply been a means for them to get what they wanted and now I no longer worked I was simply no use to them at all. That hurt me greatly, in all my life I have never treated anyone in that manner.
My feelings about friends and chronic illness are not uncommon. On many of the forums I belong to I hear the same things over and over, that people have been “dumped” by people who they would have done anything for and the heartbreak it has caused.
I know that being my friend isn’t easy, with me being housebound friends have to make the effort to visit me. I may cancel on you at the last minute due to my health or I may become ill whilst you are visiting me. To be my friend takes stamina and loyalty. Out of all those friends I thought I had, only one stuck by me and she knows who she is. I want to say a massive thank you just for being there for me, through the ups and downs.
Having a good friend in my life makes all the difference. When we get together we gossip, we put the world to rights, we share our problems, our dreams and aspirations. To do all this makes me feel “normal” again and not the odd one out.
Emailing ‘A’ :
There are some people in life you just click with and A as I shall refer to her is one of them. She found me lost and alone on a forum, she picked me, up dusted me down, gave me knowledge and the courage to challenge what the medical profession were saying. Although we’ve talked about it in our correspondence she really doesn’t appreciate how much she has helped me over the years despite her own chronic health condition.
When I see that she has emailed me it makes me smile. Sometimes we go weeks without emailing each other but I know should I need her she will spring into action.
We’ve never met in person due to the fact we live on different continents. We’ve never talked on the phone or skyped. Ours is almost an old fashioned friendship of pen pals, thrown together by chronic illness. Thank you sweetheart.
Having a house full of people:
At least a couple of times a year my husband and I hold informal get togethers. Be it for a sporting event, a game of poker or just because we haven’t had people over for a while. The guest list never changes its always the same ten or so people.
I love having the house full of people enjoying themselves. I wouldn’t and couldn’t do it all the time, each event causes me to have at least a week in bed! But its so nice for those few short hours to feel part of the human race and socialise with other people.
My parents home was always so warm and inviting as a child. We were always allowed to bring friends around, my parents had dinner parties or impromptu get togethers. It wasn’t chaotic, it wasn’t a party house but guests enjoyed their time at my parents home and I guess that’s what I try to recreate now.
My husband and I are currently sorting out our next shindig, again just a few close friends who enjoy each others company. It gives me something to look forward to.
So many things make me happy now, all the things listed above are things I either didn’t appreciate before 2007 or didn’t do before then. There are so many things I could add to that list like sitting out in the back garden in the summer sun, hearing the cuckoos on the common in April, seeing the first swallows of the summer, clean sheets! So many things that I just didn’t take / have the time to appreciate before.
I feel I know who I am now and I realise that my identity doesn’t revolve around my job role. I have come to accept the restrictions my conditions have placed upon me, I don’t have to like them but accepting them takes the anger and resentment away. This takes time and each individual will get to that point at their own pace. I want to make it clear I don’t go around with a fake smile plastered on my face. I can still be a moody bitch. I am Human and I still make mistakes.
Thank you for reading xx