It's not vascular...tears Application for FES DENIED...tears Turning 30...excitement Birthday Party with family...very happy Finding private clinic for WalkAide Ups and Downs of whether to spend £2500 on the Walkaide Feeling Broken...tears
- Walking with WalkAide
- Feeling like it's all going to be alright.
- Feeling like I am properly back in the world
- Inner Ear issues - Benign Paroxysmal Positional Vertigo (BPPV)
- Holiday Feeling
So as you can see I have a lot to tell you about so please bare with me.
1.It's not vascular...tears
Think I have already mentioned this but thought I would recap, I have what looks like a circulation issue in my left leg where my left foot goes a purple/blue/white colour and is deathly cold whilst the right leg is happily warm. I was certain that it was a vascular issue and that someone out there would be able to fix it. I went off to the hospital with The Man, excited that this might actually be fixable and possibly my walking would improve. I was there for less than thirty minutes when I heard those horrible, dreaded words...'it's neurological', what I have learnt that means is, 'we can't fix that'. So I got upset, I felt like the hope I am meant to have about all of this stuff had somehow been misplaced and I was still sick and unfixable.
2. Application for FES DENIED...tears
On the Friday before my 30th Birthday (my birthday was on the Saturday) my physiotherapist phoned and told me that our application for FES (Functional Electrical Stimulator) had been rejected. When she then went on to tell me that the application had been rejected due to 'red tape' I thought my world had caved in, it wasn't that I didn't need it, or there was something else, or that medically we could do something different, it was that there was no SLA...someone in an office somewhere, probably with 2 good legs had made the decision that I was not going to walk. I lost it, I cried and cried and cried, I felt suffocated by my own life and I couldn't see a way out, I wanted out, I didn't want to fight anymore.
3. Turning 30...excitement & 4. Birthday Party with family...very happy
WOW! I couldn't believe it, my brothers and sister in law had come all the way down to spend my Birthday with me and they had surprised me with a bringing my best friend and her partner down and my niecewhich I wasn't expecting but wishing with all my heart that they could be with me too. It was the best present ever. To have them with me made my troubles seem far away. We had my Grandparents, Great Aunt, Great Uncle, Aunties and Uncles, some of my cousins and their little ones, it was amazing. We even got time to Skype my brother in America which was brilliant. I had such a perfect day and I will treasure that memory forever. Family time cures all the worries in the world, I felt unbelievably loved and protected from the troubles I was facing. (I shall add some photos)
5. Finding private clinic for WalkAide
After the excitement of the party I was determined to sort my head out and the only way I knew how to do that was to sort this FES thing out for myself so I found a clinic that offered it and I contacted them and booked an appointment. I think it was meant to be because the clinic I found was up in Solihull and we were off to Coventry that weekend so it all tied in, I think I took that as a sign. I was so desperate for this bit of equipment to help sort out my problems, and it did, it worked. we went to the clinic on the Saturday and they booked me in for another appointment on that Tuesday and I decided to stay up in Coventry with The Mans Mum and her friend, they kindly took me off to my appointment. I tried it on and I was sold on the spot, the video's I posted about the WalkAide are from that appointment.
6. Ups and Downs of whether to spend £2500 on the Walkaide
I knew how good it was and I wanted it so much there and then and luckily for me (I am the youngest of 4 and the only girl so very spoilt) my eldest brother had told me without any arguments he and his wife wanted to buy it for me. So when I saw and felt what the WalkAide did I wanted it so much, so I did it, I bought it and walked away with it that day. What a relief it was to have found it, felt the magic and then own it. I hadn't walked like that it years and suddenly I felt like a human again, I felt like I could take steps and not have to watch my feet to make sure they were clearing the floor, it was amazing.
7. Feeling Broken...tears
The extreme high of the day before hit me hard, I had got back to London late the night before and when I woke in the morning I felt grief, not happiness of having the WalkAide, grief that my life is about putting things back together with sticky tape and hoping it holds. I pushed The Man away, wishing for his sake he would leave me and going and have a full life with someone who wasn't as broken as me. I love him so much that the thought of what my life might become was again suffocating me and I wanted him to save his own existence while he still could. My whole life seemed one enormous drama that I couldn't seem to see through. The Man talked me down, telling me that in trying to save him from hurt I was hurting him, that he just wanted me, and he didn't see me as broken, he loved me for who I am, that the disease was not what he saw. We talked it out and traced this dispair back to when I started taking Clonazapam (it is an anti spasmodic drug with a sedative effects). We agreed that I would stop taking the Clonazapam and go back onto taking extra Gabapentin at night. Since then I have felt much better, I feel happy, positive and alive. The Man says he feels like he has his Jess back, all round it has work for us both.
Got to go just now but I will continue this, I promise...we are just getting to the good stuff.
Loves for now