Bitterly sweet sides of life.

Spasms started in my arm and have just finished in my face... I'm exhausted... Sarah's due up any min.. just going to give her a shout, and Jays due up in half an hour, and my face feels like it's just gone under anesthetic for dental work... (But only its my cheek area). Not that it's ever a good time, but this is seriously a bad time to suddenly go to 0 energy.

A week ago ish, Mike took me for the medical. But there were road works and built up traffic, I was on Mikes mobile with little credit trying to get through to tell them we'd be late, when I did, he said that if we'd arrive more then 10 mins late we'd be lucky to be seen.. there was no hope of getting there in 10 mins! We were going to be seriously late, heck I even said I couldn't predict the line of traffic we'd ended up sat in.. And we were sat there for ages, after got there only to find we couldn't find the darn place, after spending ages circling the roads to hopefully see something that resembles a medical center, we gave up, and hoped we'd have more luck on foot, we found an off-road disabled bay close to where the satnav told us we had to be, but hell it was FREEZING, I was shaking so much it was a wonder I stayed in my seat... Andrew of cause wrapped up in his car seat on my lap and was quite happily oblivious, and sleeping lol.. We asked a few people if they knew where the place was and no one seemed to, and at the end of it all we must have been stood there looking seriously hopeless because a woman came out and gave us directions, she even said 'it didn't look like much, no one seemed to be able to find it'. She wasn't joking it looked like a vacant shop with whitewashed windows.. I could have gone passed it 100 times and never have guessed the place wasn't shut down. As it turned out we arrived for the medical over an hour late, only to be told that they'd received evidence that morning and I didn't need a medical... My first question was 'What evidence?' As from what I was last told they don't even know whats wrong, (I didn't say that bit, but I did ask). But she couldn't answer, as the receptionist she wasn't given that information.. fair enough.  I was to cold to be annoyed, I just wanted the gas central heating and a cuppa!! It has still left me wondering what evidence they've had.. but on the plus side though at least we know where to go if I'm ever called up for another medical. 

Had a good chat with the health visitor, she mentioned a group for younger children. I must admit. I got a little scared to start with, social situations and me are normally a big no-go area.. I told her how I felt, I also told her that Andrew is already uncertain of people he doesn't know, and can get really tearful around strangers, even her if she doesn't come enough, and she did agree... he's only 7months and I don't see that as being a positive thing. But I also asked her how people are going to be around me, I don't know why I asked her that. I've had very mixed reactions from people making accusations, to one man calling my kids 'my little helpers'.. Oh I so put him straight. They are my children, not my helpers. End of.. (That is one sure way to piss me off). To people being fine with me being a wheelie-mum. Well she basically said that there's going to be ignorance no matter where you go. And that Andrew deserves the same as any other child. I couldn't argue to that, not even in my 'mentally analyse every detail from every angle' kind of way, which is something I have a natural talent for, (Though it's certainly not a gift, not when I can be at it for the same topic for weeks, or months even). So she's brought me a flyer for the center and it lists their activities, now all I need is to find my nerve, wish me luck! 
Love n hugs
Louise x 

I've been asked about my disability time and time again, people on and offline, I find it difficult because I don't know what to say, I don't know how to answer.. the truth is, I don't have a 'quick answer', or the right words, nothing to satisfy someones curiosity, not really.
So here I'm going to give an outline of some of my disability, (But even at that it's going to be an essay)! How it came to and where 'I stand' with it. And also to add, I don't want sympathy, just understanding.
When I hit puberty, which I did early, I began to trip up, it hurt like no other, my who ankle seemed to collapse in on itself, it actually felt like I'd near broke the damn thing. Sometimes it took me ages to get back on it again. It started happening in my right ankle and as a short few years passed it affected both. My mum took me to see a specialist, they put me under anesthetic to check the ligaments, they said they were slightly to long, it would be pointless operating though because of the chance it would make them worse, I also had physiotherapy, the physiotherapist discovered that they were so weak that he was surprised they weren't permanently damaged. I had physio week after week. They took me out of physical education at school. Even after I was discharged from physio it didn't stop. I was filled with virtually constant aching legs, pins and needles, coldness and feeling very tired.. the list goes on, but nothing ever stopped. I remember going to see a different specialist, he made me out to be some form of attention seeking teenager, and in an attempt to shock me, he threatened calipers, I actually agreed to them! After they were both sat there silently stunned. My mum started saying how horrible they were, and the fact that it was something that I didn't want, and that's something they both agreed on. It was my turn not to say anything. You can't sit there at 12 ish.. (God it's been to long to remember for certain). Trying to put forward your point, that your legs were already aching all the time, the the trips hurt, that you've had enough. We left. They started altering my shoes, I had elasticated supports, the elasticated supports were itchy and irritating.. and didn't help. I can't remember why they eventually stopped altering my shoes, maybe they weren't taken anymore? I honestly don't know. I stopped telling people, there was no point. At 14 ish I started walking without bending my right knee it seemed to help stop me tripping as much. Yes on one hand it was deliberate, but I didn't see it that way, in my mind, it helped and that's all that mattered, regardless of anyone else's opinion. As I got older, the pins and needles got worse, they started from my lower back as well as in my and the pain got worse too, and if I got cold my god the agony had me in tears. It took me hours to warm up I'd lay in bed shivering over the smallest bit of cold weather, feeling cold to the damn core. I hurt the same if I got to hot! Only the heat gave me blinding headaches and masses of stress to top it off. (And with both It's still that way). By 15 I didn't live at home anymore, I was pregnant too, and still had the same problems, it once happened as I was going down a set of solid concrete stairs, my head felt so wrong and my ankle went, I held the walls but then as I was trying to get up my legs just literally went under me. Me, alone, and pregnant went falling down un-carpeted and un-protected concrete stairs. I bled, contractions started up, but luckily for me at the time, they stopped it was early on, there would have been no hope, and my now ex was working away. (It is just something that sticks in my mind,  But I'll leave it at that). By 16  my eyesight worsened, my glasses didn't help, and my legs, when I walked on them, started going purple or black with pink blotches,  Leaning on my legs hurt me, sleeping was a nightmare, even having baby (As she now was). Sat on them hurt, but I gritted my teeth and told no one. (My second daughter was to arrive later the same year). I discovered my ex was seeing a 14 year old for lords sake, he was 27/28 ish at the time. He even had the audacity to ask if I'd live in a house with her and share him! In a nutshell, not a damn chance, he could fuck the hell off. A single parent aged 16/17 living with a baby pregnant with another.. I couldn't cope with it, I went to live with my mum. I got a couple of jobs in that time, but the pain was triggered something horrific by working, as I worked my legs/back were in blinding agony,  the more I did, the more it hurt. My whole body and mind was screaming stop, stop, stop.. It slowed me right down, I carried on for awhile, but I had to tell the people I worked for, I don't ever remember telling my mum? Not sure I did.. But I lost the job. I met someone else, we got our own home, the pain was more frequent, the tiredness went beyond tired. I started drinking. The relationship was to fail, alone again with the girls in the house, I muddled on. Drinking helped me sleep. It helped numb me from not just the pain, but the reality of the situation.. And I hated it, but by this point there was no hiding the pain anymore, to top it off my legs didn't even feel like they were attached to me anymore.they tried me on blood circulation pills which never helped. I just stopped taking them, and my legs were to crumble under me on a frequent basis, with pins and needless, weird cramp, numbness and then agony, followed by unreal exhaustion. I started to get light headed, and other odd things back then. I can remember going down the stairs then suddenly not being able to put one foot infront of the other to go down the step, it was a mass of bizarre confusion, I knew how, it was if my brain wasn't connecting the message, I eventually ended up going down on my bum. Before long I'd begged the doctors for something to help me walk, I was literally dripping with sweat due to pain when I walked, it wasn't funny, he gave me crutches and an appointment to see if there was anything they could do to help. I remember it was about this point that my mum finally realized, and said she always thought I was exaggerating but she knew now. I didn't say anything to her. They gave me crutches and a walker, a couple of years later it was to be those things as well as a wheelchair, because by now my legs were going through their crumbling, cramp, pain exhaustion for me, cycle, that I hadn't any other way to manage. (Family all struggled with the changes, none more than me, they were finally feeling something, when I'd been feeling it for years, in saying that, no, I don't hold a grudge). I noticed my vision getting worse and I can remember going for an eye examination, through the test he tried different lenses. There was no affect. My eyesight stayed the same.. glasses did nothing, he recommended hospital. But even up to now, it's just something that to be honest I'd never sorted out. I met someone else, our relationship was to build. And he moved in, then one day as my legs normally did, they gave up under me. I just never got back up to being able to walk again. The relationship went through a really bad patch, we broke up and when I eventually took him back we moved away, away to what I hoped would be a life to rebuild away from people I knew, away from gossip. It was not to end that way, I became pregnant with Jay, and he became violent, I tried to make it work, I tried to change, after all how many 'daddies' do my kids need? But it got worse, he'd done everything from punching to biting to scar point, to dislocating my joints, then it affecting the kids, he started starving us. The way I am it took months of planning, secretly and terrified.We fled. And rebuilt our lives. He doesn't know where we are, I however know he's on FB.. that's why I use a name that's not mine. Jay has autism and ADHD. Now, when Jay was 2/3 we met Mike and Mike and I have built our relationship. Jay looks at him as his dad, he said that Mike was his real dad the other dad is his Step-dad there is nothing higher he can say of Mike than that. 8 years after we met, we now have Andrew too. Together we are a family, a real one. About 7 years ago ish, the doctor said it's possible MS I went for a back scan, there was no scarring, so he said I don't have MS.. I can't book another one.  Well. My disability still rules a lot of my life, my speech now sometimes doesn't go right, my words don't come out right.. it's as if the connection doesn't goto my brain, and I try to say something and it doesn't happen, I've been accused of being drunk when I'm not.. it's just so socially degrading. I'm still in a wheelchair.. eyesight's still crap lol. I also go through times when I cant remember the smallest of things, even what year my sons in at school, my age... eh it normally comes-to eventually its just very frustrating, I have masses of spasms even in my face, arms and hands now.. pretty much everywhere.. And the sensation of pins and needles run from my neck. It's something I live with, I have to. I also get an odd feeling of falling backwards to the point I reach out to support myself, it's very odd, I can't fall backwards. My arms for the past few years have also started aching and hurting, a couple of joints have also gone wrong to the point they look it.. but there is nothing I can do, nothing they can do.. I just fill up my system with painkillers and plod on. I have my partner and my children. They are my strength, and even more so when all other strengths fail.


Now I just want to add if you've read it this far, you don't have to comment, and certainly don't apologize, seriously. I'm still me, you are still you. More than likely, the only thing that's changed is you've seen the 'inner me' online first, before you've 'seen' the rest.. One actual beauty of the internet really.