Got my note from the doc's to say i'm fit to go back work :-) i will start back on monday, looking forward to a change and getting back to having a laugh with the lads! It's been doing my head in a bit being stuck in the house, i know at some point i will have to get used to it but for now i need get out.
Been having a think about youtube video's, may do a few video's next to see if that will help raise more awarness and get some people donating on my just giving page. I would like to have got £1000 by this time next year. I have been trying to think of a way i can raise money but i am limited on ability, i'd have loved do a parachute jump! i wouldnt mind doing a charity fishing competition but i am not the best organiser lol, maybe i will get something sorted soon.
My sister donated £350 to the MNDA that was part of a collection after her husband died so that was really good of her.
Signed up this morning for the MNDA conference in Manchester this year, it will be my first time and also only the second time i will meet fellow sufferer's. I dont relly know what it will be like but quite looking forward to it.
I went fishing yesterday and loved it! admittedly it was hard, the cold made the fiddley jobs harder but my mate that took me had no hesitation in helping me out. There is a lot i learnt about the progression since November last year, but i do believe the cold made a big difference on my hands and when it warmed up slightly things got a bit easier. I would really like to keep this going as long as possable and with some modifications to the stuff i use, a lot of help from good friends and sticking to going when its warm, i think i could go a good few times this coming summer :-)
On a slight down side, i have suffered with ache's, pains and tiredness last night and a bit this morning but i wont let that stop me!
Just been sorting some fishing bits out for my first trip since November, carrying some of the stuff from one end of the garden to th other was hard work and just simple things like opening zips, undoing buttons was an sodding nightmare. This disease is awful in so many ways, its just take, take, take! Ive been really looking forward to a days fishing tomorrow but now i am quite on edge, can't help but think its reached the point of me giving my biggest hobby up. I think im going to just go bed and feel sorry for myself! DAM YOU ******* MND!
Quite peed off this morning. I wanted to see doc to get signed off sick so i can go back work, appointments can be made on the day by ringing at 8:30 am so i phoned at 8:34 and was on hold for 7 minutes, when the receptionist answered she said can i hold for 1 minute, yes thats fine, 30 seconds later they hung up on me! i calmly rang again and was on hold a further 8 minutes and when she answered this time i was told, sorry no appointments left today! it was now about 8:52 am, i was fuming and tried to explain i had been on once and they hung up on me, oh no we wouldnt have done that she said, well you bloody did! I ended up quite frustrated and upset by the way i was spoken to and put the phone down.
Polly has since been on to them explaining what had happened but basically its tough, not an emergency. All i want is to go back work! Now it looks like the middle of next week before my doctor can agree im ok to go back.
What a lovely few days we are having :-) It makes me feel so much better when the suns shining and its nice n warm! Would love to do something nice today but feel quite limited. Its days like this that you go out for nice walks, take our Alfie on a stroll somewhere, but then it clicks, hang on i'd only get 100yards then i'd be goosed for the day! such a shame. My thoughts about a scooter has been taking over my mind the last few week, it would make things easier for going distances outside but i cant help but feel i will look a fool on one. You tend to think of them as a means for old, less mobile people to use for going shop, not really nice to think of it that way but its quite true, you never think at 36 you would need a scooter! I will have to get one soon but i need it pimping up a bit lol, some alloy wheels and a spoiler on it hahaha.
Going back to this condition, i find sometimes your enjoying things or doing something that really takes your mind off whats really going on and has me feeling like ive got nothing wrong, obviously your brought back down to earth with a bump when fatigue kicks in or you fall over! These occasions are few and far between, and most the time your it consumes everything you do. Constantly worrying about falling down the stairs is biggest thing, ive fell down a few times but luckily not done any permanent damage :-)
We had our local council OT come out a while back and was less than impressed with what she said. Basically she recommended a through ceiling lift to get me upstairs, which we wasnt keen on as we dont have much space in rooms as it is. The other was widening our bathroom, which is 6ft x 5ft, we even have to use a folding door because its so small, anyway by widening it we would eat into my daughters bedroom which isnt the biggest either.
We argued that this is a very progressive disease and in the end we would need a small ground floor extension so that a bedroom and walk in shower/toilet would be easily accessed so bearing that in mind spending money on a lift and altering upstairs would only be a short term solution. She could not consider the extension and also Pollys income may forfeit any help from the council! what about all the bills she has to pay? oh they don't look at that! what a bloody surprise. Oh but i can get handrails free, what friggin use are them when you have no hand/arm strength! We can get you some chair raisers, oh lovely, thanks.
I suppose its all understandable in a way but it does get you down at times having to battle for help and being penalised for having a job!
Anyway we will fill an assessment form in and see if we could get help but im not holding my breath. We will no doubt have to save the money our selves, which we will do to get what we know we will need.
This post started off so well lol. My rants just pop up now and then :-)
Wow the funeral was very special, the police took control of it and i must admit they did a great job. It was however still a very, very sad day, i personally felt really emotional and had all sorts of things going through my mind, mainly about death itself! it frightens me. I am not a very religeous person and struggle to believe there is anything after death, thats it, end of, Nothing! i do hope im wrong.
Onto another thing ive mentioned in a previous post, Blue Badge escapade. Allow upto 28 days for your badge to arrive, it says, well 2 days after giving application in it was ready! guilty conciense me thinks lol
The next thing we have done this week is book a trip to Disneyland for my little girl... wahooo, not told her yet but plan to tonight and i cant wait to see her face :-) i am really excited about it so i cant imagine how excited Hollie will be.
Finally ive been getting a bit upset over fishing, yes you may well think, SAD! but ive loved my fishing so much and finding it very difficult to come to terms with not being able to do it any more. Its been a massive part of my life since childhood and love nothing more than sitting on the bank of a lake in the peace and quiet, beautifull surroundings, the fresh air and catching carp. Ive heard all the things like, focus on what you can do and not what you cant, there are people far worse off than you etc, but thats far easier said than done! I will no doubt get my head round things and learn to accept what no longer able to do, but at this time everthing is just slowly being taken away without any choice.
Polly and I had a liitle chat about how im feeling about this last night and to my suprise a good friend text me today to see if i wanted go fishing next weekend! mmmmmmmmmmmm anyway i will be giving it a go and see how i manage.
Here are a couple of my fishing pics :-)
Well the last few days have been better, had some good comments off some great people on ALS forum which was nice. Spent a bit of time sorting things out, went to Doctors and been given a month sick, wheather i go back work before the months up im not sure. I really think getting back into work soon will really help lift my mood, think i am missing some of the laughs and banter! there is some great lads, and with the company being quite small were like a family.
One thing i will note about today was when i took my Blue Badge application into local council. I got there with what i thought was the right documents only to be told by the rather rude woman behind the counter, this wont do, thats no good then slowly followed by, you need 2 passport photos aswel, now i Knew i didnt because i had ticked the part in the booklet were it says terminally ill! so with that in mind i quietly said, it says on the form i dont need any, to which she quite loudly replied, thats only if your terminally ill, looking at me as if im trying to pull a fast one or something. I then had to say, with a big que of people behind me, I am terminally ill! it really made me feel like shit, so i quickly collected my stuff and left.
Once i got home and sorted the correct documents i told my Polly what went on, she kicked off lol, off we went back with the right doc's, but when we got there it was someone different who was a lot more pleasant. Polly still asked to see the manager and made a complaint, the manager was very sympathetic and understanding of our complaint.
Something not so pleasant is the funeral of my brother inlaw tomorrow, its gonna be a tough day.
Had a better few days, thank god. It was my birthday so my little girl made me a cake and helped her nani do me a little tea party, really enjoyed it :-) Also today my beloved Liverpool FC beat the Mancs 3-1 which was great, it didnt go down too well with my polly as she's a united fan lol. Can be quite funny at times when were having a football debate.
Here's to some better times ahead!
feeling quite low at the moment, noticing more things that are getting harder to do! To cap it off a close family member took their own life, i feel angry and sad that someone could do this. I would have done anything to have their health, this is what angers me, but its also so sad that a person gets so low that they resort to such a thing.
My family are having such a hard time, when will things change? we all need some good times, surley it cant all be doom and gloom.