It's been a while since I have told you guys in depth where I'm at health wise. The changing of seasons has been tough on me and the last few weeks I feel like I have gone backwards after I had made small progress during the summer. I'm spending most of the day in bed only getting up and about to do small tasks.
My memory is touch and go. I still forget names, and things that have happened but it's not as bad as it was - there was one point I barely knew where I was half the time. I'd say I'm more forgetful rather than completely clueless.
Insomnia is my biggest enemy right now. My body is so exhausted but as I am constantly running on adrenaline to get through the day when it's time to sleep I can't nod off which then becomes a viscous cycle. My sleeping pills don't help so I'm looking into alternative routes with that one...
I'm not fainting as much as I was which is great but I'm still having horrendous fits which have recently been on the rise again (They look like I'm having a stroke and an epileptic fit at the same time)
My pain medications mostly keep my pain levels under control but neuropathic (nerve) pain during the night can get extremely bad. I hate being dosed up to my eyes in pain meds but it's the only choice I have right now. The hallucinations I get as a side effect are not welcomed with enthusiasm either!
Paralysis is something that has been causing me a lot of stress. Loosing the use of my limbs is so very frightening.
Some good news - I haven't been sick in quite a long while! I'm tolerating food better although still loosing weight - NOT a good thing despite what people might think. Appetite is neither here nor there but I force it because I know how important food is especially as my body doesn't make new energy easily or conserve vital nutrients.
My 'brain fog' is also better and I can now concentrate better on the TV and have been reading more often, something I'm pleased about!
Comparing myself to how I was this time last year gives me a lot of hope and strength. This time last year I was on the verge of hospitalisation, unable to fed, change or wash without help. I can now do all of those things myself which is much better for everyone. This time last year I was in and out of A&E every other weekend, I haven't stopped breathing in a long time now and the last time I was in an ambulance was in June. The steps I have made are very small ones, but I'm so grateful for them and the biggest change of all is in my mind. I cope better. It's still very very tough to accept a life that isn't a life at all, but I just take it day by day.
I don't want to bore you too much with lots of health jargon so I'll leave it at that.
How have you guys been doing?
It's so great to see people you love doing so well and being successful in life right? Well earlier this week I had a big reason to smile as one of my friends scooped BEST ACTRESS at the inside soap awards 2013! Jacqueline (better known to you as Lauren Branning from Eastenders) and I met at performing arts college where we instantly became the best of friends. I feel so lucky to have watched her journey from way back before she was on our TV screens and I really couldn't be happier for her and I am so pleased that her talent has been noticed with such a deserving award, knocking off some very tough competition! I still remember the phone call when she told me she had got the part of Lauren and from that moment I knew amazing things were coming her way.
Watching my friends go off and take on the world is sometimes hard for me because I wish I could be doing the same thing. Life with such a debilitating illness gets frustrating in that respect. But when I see my friends excelling I always feel so happy for them. They are putting their energy into something they are passionate about whether it's on a small or a big scale and as a friend that is something I am always very happy to see!
Here is my girl with her lovely big shiny award, aww I'm welling up just looking at it! Doesn't she look beautiful! In my opinion she should have won sexiest female too, but I might be a bit biased...
Don't forget to follow Jac on twitter @jacquelineMjos
Lots of Love
I'm a part time wheelchair user which basically means I'm not completely dependant on my chair, and I mainly only need it for trips outside the house. I don't tend to use my wheelchair much as I'm still mostly housebound, but when I do I am always very grateful for the opportunity to actually be going out as without it it wouldn't be possible. However the more I use it, the more I begin to dread using it. Like the stares, sympathetic looks and patronising comments aren't enough to put a girl off, I was also recently given a few more reasons to add to the list of annoying things about being a chair user.
Before I flew to Madrid last week, I needed to pop into town. I've not been into town in the chair before as the last time I attempted it my pain levels were so high we didn't get very far, but I can't say it was a very pleasant experience.
First stop - the bank. Whilst I appreciate that banks need to take out certain security measures, they hadn't really given much thought to their disabled users. Not only could I barely fit through the designated queueing isle without knocking over the barrier but once I reached the counter I could hardly see the man behind the desk, let alone hear him through the plastic shield, consequently leading to me shouting rather loudly - Awkward 1 Hayley 0. Once the whole building had heard what I went in to do I was told to put my card in the reader and enter my pin. Standard procedure had I been able to reach the bloomin' thing! If I couldn't stand for a few seconds, lets say if I had no use of my legs at all, how would I have got around that one? With a bit of difficulty I imagine. I left the bank with less money in my pocket, and less optimism for this trip to town than I had started with.
Next I wanted to go into a book/craft store. I'd like you to take into account that this shop is part of a large chain in the UK and whilst their premises in my town is fairly small, their attempts at filling the shop with as much stock as possible was clearly the goal. In we wheeled (my Dad was acting as pusher for the day) and I kid you not got about 3 feet in before I literally could not go any further. The isles were full of towers of stuff stacked up so high. Baskets overflowing with tacky bargains. Anyone with a pushchair or even somebody on the larger side would've struggled to squeeze by. The items I was after were at the back of the shop so as we were failing miserably to maneuver past the piles of stock, all the gormless staff members could do was look on in fear that their perfect pyramid of pencil cases was about to come tumbling down. They didn't even ask us if we wanted any assistance and we were the only people in the shop so I thought screw that, if you don't even have the decency to offer a hand I'd rather spend my money elsewhere, and we reversed back a whole 3 feet and went on the the next shop.
So by this point my patience is wearing thin. I'm already in a lot of pain and the two places I had been in hadn't been a huge success. Things could only get better right?...
The last shop I went in was a drugstore. My first impressions were good, there was a ramp at the door, nice wide isles, and then we turned a corner. There in front of me was a great big mountain of toilet rolls stacked up high. 'Great!' I thought. How am I supposed to fit past that? I tilted my head back and looked up at my dad who was grinning a mischievous grin. We both chuckled. He knew what I was thinking and I knew what he was thinking - Cue evil laughing. He wheeled my closer to the toilet roll mountain and just as we approached it my foot rest 'accidently' caught the bottom of the pile and the whole thing came tumbling down. WOOPS! We turned back, left the shop and went straight back to the car and went home empty handed.
I think I will be doing all of my shopping online in future.
How great are my editing skills! & my face has turned into a grumpy cat...
If any of my spoonie readers have any similar experiences I'd love to hear them in a comment below!
It always seems just as I am getting settled in I'm off again. I have not long been back in Madrid after 7 weeks being back home by the seaside. My flight didn't go too well this time and it has put me off travelling for a while. Being away from my boyfriend is always hard and this time was no exception. In true M.E style post surgery I was not feeling too great. My body had taken a good battering and I'm still suffering now and I believe I will be for a while yet before I start to feel 'normal' again (Hayley normal anyway which isn't normal at all really...)
I feel very lucky that I have escaped the cold for a little while longer - I really really really don't like winter! It isn't hot any more but it is still quite warm and perfect for taking a nice long walk or bike ride, if only I could! It doesn't get dark until about 8 so if I spend most of the day sleeping I still feel like I have seen some daylight at least.
That's all for now anyway, here are some photos to sum up September/the start of October :)
Lots of Love