Someone asked me one day what it felt like to be bed bound for all those years and then go back out into the real world. 'Go Back into the real world' I pondered that for a while, as I wondered what on Earth had led them to believe that my world hadn’t been real.
One of my soulmates once said to me, you're amazing, I love being around you 'Your world is like a whole world inside a world.'
Then more recently someone said, you really do live in your own world don't you. I actually don't think this person intentionally meant that as a compliment, but you know what I said...Well thank God for that!
To go from being in bed full time for two and a half years in 1999 and then again for another two and a half years or so in 2009 is something that is very hard to relive in order to share this with you. You see my time in bed and wheelchairs in reality was much longer than that five years...I just stopped counting after I made that first move from bed to couch, for those first moments of that very first day...As I was so delighted that I just couldn't bear to think about the many hours still spent in bed, all I could do was be so dammed grateful to be away from those four walls, even if it was at first my wheelchair wheeling me through for those moments of a change in scenery once or twice a week, that was all I could focus on, the hope that each moment would multiply. You can't just go from being in a situation like that and bounce right back into the world, as much as I would visualise it, and my 'I can do anything' spirit' believed I could. Even with those powerful positive intentions of doing exactly that, my body and brain had very different ideas...THEY needed time to gradually recover, from being horizontal, integrate back into society, with all that noise and rush, time to absorb this new 'real world', with all its strange new things, smells and reactions. And as I'm sure anyone with severe M.E will tell you, recovery just doesn't happen over night, in fact come to think of it I haven't heard of someone with severe M.E recovering! Anyhow It's just not anything like the rehabilitation of other diseases.
It really is a very odd thing indeed how much changes in the outside world when you have been confined to four walls with very little stimulation, as my brain and body just couldn't handle light, sound, smell, touch or company. So the things I loved doing like hugging. reading, music, nature, listening and chatting with friends, dancing, singing, movies, swimming, cooking, cycling and art all became distant memories.
So the first time round getting back on my feet was easier, and that may sound strange considering I had left my husband with my three boys whilst still in a wheelchair, and moved to the other side of town. I felt that my children had enough to cope with with their dad and I splitting up and me now being a single mum whilst still in a wheelchair, with no family around. So I decided to keep them at the same school and nursery so that they could remain with the same friends they had grown with. At this time they were 4, 7, 9. My bus journey to take them to school in the morning took three quarters of an hour there and back, then again at lunch time to pick my youngest son up from nursery, and of course the same journey time going to pick them up when school finished. So the daily journey in all took me four and a half hours five days a week. That lasted for many months in my wheelchair until I eventually managed it on crutches. I took very little from the marital home, just a few small kitchen cupboard items, the photos, CD's and a few toys and clothes for the boys. To build things back up my carers took me to car boot sales and auctions. I had no family support and my carers were told similar rumours to my friends, which left us in further isolation, as that's one of the things that can happen when you are disconnecting from a domestic abuse situation. The thing is I am a very strong intelligent person and I’ve heard that some people are under the impression that it doesn’t happen to strong intelligent individuals. I am now being slightly more open about this, and it has taken a lot of courage to actually talk about it, as I have always been a very private person. But I believe that in order to raise awareness, understanding and compassion for those who are in these vulnerable situations, and help others to find better support we cannot shut our eyes to these types of situations by brushing the devastation it causes under the carpet. For a very long time I could not tell anyone as I was too ill and scared to completely understand what was going on.
So you see not only was I recovering from severe M.E brought on by a head injury that first time in 1999, but unknown to me I was also recovering from a massive amount of trauma, which had left me with PTSD that had been going on silently and undiagnosed for well over 30 years!
To be continued....