Family

Family

This is my family, well almost all of them!

We had a big family gathering last weekend, to celebrate my parents 60th Wedding Anniversary. Almost all of my immediate family were there and it’s not very often that we are all able to get together, so this made the day even more special. The photo above is my parents, their children, grandchildren, great grandson and spouses (I am the one sitting down with large pink flowers on my top).

None of my family live locally to me; my parents and siblings all live in North East Hampshire, 100 miles away from where I live, which is a two hour drive. Before I was ill this wasn’t too much a problem, I could drive and had my own car, popping down to visit for a day, weekend or more was easy.

However, now the distance might as well be 1000 miles, especially since my partner left! I can no longer go and visit whenever I want; I am reliant on other people to put themselves out in a big way. This is very hard for me to deal with! This year I have already been unable to see my Mum on her 80th birthday or on Mother’s Day and it was my first Easter not staying at my parent’s house. Of course they do understand, but time with my parents is precious, they are both in their 80s and although currently they are both in good health, I know they won’t always be there.

I last saw my parents at Christmas, thanks to my wonderful sister, who took time off work to make the 200 mile round trip twice, to collect me and to bring me home again. At that time I was, quite frankly, a mess. I was still shell shocked from my partner leaving me and at that point I had no idea where I was going to be living. Now, five months on, I am thankfully doing much better.

This time my fabulous friend, I shall call her ‘A’ (because as a friend she deserves an ‘A’ every time) drove me down to Hampshire. She did it once last year, so had already met most of my family, and my parents were delighted to invite her to join their celebration. ‘A’ is not used to driving such a long distance, so this makes me even more grateful to her for doing it for me. We travelled down on Saturday and back again on Monday, this enabled her to relax and enjoy the celebrations on Sunday.

To be away for two nights, have constant company when I’m used to the majority of the time on my own and socialise in a room of about 60 people is a double edged sword for me. It was wonderful to see my family and to be be looked after for a couple of days, but managing my energy was always going to be hard and I knew there would be “payback” (this I will try to explain in a future post) afterwards.

But, for me, the payback is worth it. I consider myself very lucky to be able to take part in social occasions such as this, even if it does knock me sideways afterwards and takes me several days to recover from; many other people with ME/CFS are not so lucky!

It Doesn’t All Have to be Done Today!

Five months ago I was broken, completely. I had reached the point where it felt like the only way out, the only way to stop the pain was to die.

I was having a hard time dealing will my illness, how much it limited my life and how much it had taken away from me, my landlady had written to tell me that she wanted to sell up, and without any warning, my partner left me!

Every single fibre of my body had reached its limit: physically, mentally, emotionally I could take no more. It was too much. It was too overwhelming. I was drowning and with my last breaths I was shouting and screaming for someone, anyone, to help me.

Five months on I have moved house, have yet to fully come to terms with the breakup of my relationship and I still have a long way to go in dealing with my ME/CFS and how it affects every single aspect of my life. But I am very much alive!

It has been a very hard journey to get to where I am today, there were so many things going on five months ago, so many decisions to be made, so many things to face up to and deal with, all at once. But that’s the thing, we humans can’t really deal with everything all at once, not effectively anyway. The trick is to deal with things one at a time and eventually it all (hopefully) falls into place. The day I broke I was completely overwhelmed with all that I had to deal with; I had no idea where to start or whether I was even capable of making simple decisions, let alone the massive ones. I just wanted someone to scoop me up, hold me tight, tell me everything was going to be ok and fix it all for me. But life doesn’t work like that, we are the masters of our own destiny, we are the only people that can fix our problems, our lives, and our hearts. With the love and support of a few very special people, I slowly started to pick through the pieces of my life, with the motto “It doesn’t all have to be done today”.

Today is ME Awareness Day…..

download

….so the perfect day for my first blog post!

This blog is first and foremost for me, to help me process all that I have been through in recent years and to hopefully enable me to properly grieve for me and work out how to move on with my life, with the limitations that I am currently living with.

It sounds a strange concept to grieve for someone that hasn’t died, but we have all experienced the loss of someone who is still alive, whether it is from a broken friendship or relationship, or how illness or trauma has changed a person from the one we once knew and loved.

Before I became ill I was a very positive, energetic, passionate, enthusiastic person, who thrived on helping people, being busy and having at least one project on the go and at least one other in the pipeline. Ill health has robbed me of all these things, and three and a half years on I am still trying to come to terms with that.

Initially I believed I coped with the diagnosis very well, I accepted that this was not going to be a short term illness and that I had a very long road ahead of me. I was mindful of the fact there were people far worse off than me and I was very thankful that the people around me believed that I was ill and not just suddenly lazy. I maintained a very positive attitude and was determined that I would be one of the fortunate few that would, one day, make a full recovery. It was this positive thinking and mindfulness that kept me going; that and the loving support of those closest to me.

This is not to say that adjusting to being so ill was easy for me. I was never one to sit and do nothing; prior to being ill I was constantly multi tasking and I seldom just relaxed, without beavering away on something else at the same time. Knowing that I had weeks, months, maybe even years of having to rest and allow my body to recover was never going to be easy for me to accept.

But I was kept fairly occupied in the first few years, with battling the DWP for sickness and disability benefits and numerous doctors and hospital appointments, for both myself and my son (who has Cystic Fibrosis). I’m sure we counted nine different hospitals in nine months at one point! There are no diagnostic tests for ME/CFS and the huge variety of symptoms overlap with many other illnesses and diseases. Therefore it is necessary to rule the other things out, so I was referred to many different specialists, in order to explore different sets of symptoms, to ensure that they weren’t indicators of other problems.

In between all of these appointments, when I was cognitively able to, I was doing as much research as I could, to learn everything there was to know about my condition and what I might be able to do to get myself well again.

Now, over three years later, after many forms, letters, appeals, tantrums, breakdowns and tears, I have finally proven to the DWP that I am not faking it, I am really this ill and my mobility is this much compromised, so the sickness and disability benefits that I am entitled to are now finally in place. I have seen consultants from many different specialities, had numerous blood tests, x-rays, scans and procedures, learned far more about various organs of my body than many people my age, had a little input from a physiotherapist and an occupational therapist and learned that is now it, the NHS sadly does not have the knowledge or resources to help me any further. There is no cure, there are no answers and there is no universally recognised treatment. So, despite how ill I am, how much this illness hinders my mobility and my ability to do simple everyday tasks, I am now simply just under the care of my, thankfully, very empathetic and understanding, although seriously over worked and stressed, GP.

My son flew the nest nearly two years ago; to follow his dream and study music and my long-suffering partner left me shortly before Christmas. So now I find myself living alone, with no treatment, little support and help, trying to work out who I am now , what my future holds for me and what is my next step.