Bring Me Sunshine!!

In the words of the great double act Morecombe and Wise indeed “Bring Me Sunshine” as all this wet, changeable weather is playing havoc with my ability to breathe. In saying that too hot is not ideal either but it seems to be a whole lot better than when it’s damp.

I won’t apologise as I always seem to do for not blogging for a while because I haven’t even turned on the computer much only for the essential stuff. It seems that all my attention has been directed to staving off this blinking chest infection I have had for a while and breathing of course. I have had to spend a fair amount of time trying to sort out this new car too which although tricky and time consuming the outcome is good. I was rather concerned that as my new car would not be ready for around 8-10 weeks I would end up being unable to get out for some time as getting into and out of my present beauty is now proving almost impossible. After a lot of consultation and pleading and begging and endless phone calls I have managed to get the company, Automotive Group Ltd who are providing my new car to come and collect my present car and provide me with a hire vehicle adapted the same as my new one will be until mine is ready and what’s best of all is that Motorbilty will continue to pay for it and it should be here this week!!! So Jonny5 will be on the move again at last, LOOK OUT!!!

The other bit of I guess, “Big News” this week is the eventual OT Assessment for the grant work etc which was on Wednesday. It was quite fruitful and also a big help in the fact that at last things were actually moving. There were and in fact still are a few stumbling blocks to overcome but it looks highly likely that things will go ahead in some form or another. They of course have to firstly look into whether the house can be adapted as it is without the extension but there is no way at all. We may have problems with the water/drainage being the wrong end of the house. There are some issues over having a Bath or Shower and what type etc but nothing that I don’t think we can’t agree on eventually. I have asked to have to kitchen converted in some way to help me to safely work/cook out there as it is very dangerous at times at the moment. On a more immediate note the OT Sue Collins will be coming back next Wednesday with a couple of portable ramps for me to use to get out of the house etc until they come to build the permanent one later on and she will be bringing one of the Grants Officers with her who is a Surveyor and will have more of an idea what can and can’t be done. So after all this time things are starting to move in the right direction.

On a different tangent now, “My Health” this chest infection is continuing on regardless of any intervention on my part so when visiting Merlin at Heath Towers Friday I have got him to prescribe a different anti biotic. For those keeping record it is Augmentin also known as Co-Amoxiclav. I have taken this in the past, hell I have taken pretty much every anti biotic known to man before, with some success and some failures also but hopefully the former in this case, so again no Harveys for me for a while, drat drat and double drat!! Merlin put me on a course of Methotrxate when I saw him about 5 weeks ago to try and stop the skin gvhd from progressing further up my chest which it has been doing and it seems to have worked somewhat too, which is interesting for a number of reasons, not least of which the fact that it does somewhat prove that the skin condition is reversible and therefore this treatment in Birmingham etc may just help. A bit of positive news you will all no doubt agree. So come on then Merlin pull you’re bloody finger out and get it sorted because the clocks ticking and the meters running!!!!! Well carrying on the health route, whilst I was at Heath Towers Friday and sitting talking to Merlin actually, my breathing all of a sudden became very difficult and my chest was getting tighter and tighter and in fact had to get Judith to quickly get out my Oxygen before I flaked out. After a short while and a good old blast of oxygen I was fine although rather concerned as to what had happened. I had just moved around a little I guess after sitting still for about 3 ½ hours having my immnoglobulins and also I was sitting forward which doesn’t help as it doesn’t allow me to breathe as well. After managing to convince the staff there I would okay to get home off we headed. The journey home was fine but later on after trying to move about a bit it happened again. It soon calmed down after another shot of oxygen so after that I keep the oxygen on all night and I was fine. I did have to get Judith to stay with me all night on the chair as I was a bit scared things might get worse and even now after a day or so it still worries me a little. I had to get my Little Sis to come and sit with me yesterday whilst Judith went shopping too which was nice. I don’t help myself when this type of thing happens mind you, as all the experts will tell you, the last thing you want to do is panic as it makes it worse, so what do I always do??? You got it!! Well I suppose I will just have to keep an eye on it for now and see what happens, but in the meantime make sure there is lots of oxygen around.

See Ya!!

Yep I think I’m still here!!

Well, I just realised that I have not been keeping the blog up to date. Especially as a few of the recent posts have shed a somewhat, although accurate derivation in my condition etc, so for those that have been Emailing, to see if all was well and if they could be any help, of which I think I have managed to respond to all of you, thanks a million for all your kind words and support, I do appreciate it and it also does help immensely at times like recently when things are, well let’s just say difficult.

Jeeez has it really been a week?? Sorry!! Okay on to the fun stuff now, well, maybe, let’s just see?? Things have been very much moving on in the direction that life seems to now be going, with a few exceptions of course else life would be such a bore. I have managed to pick up a bit of a chest infection (for a change). It’s a bit of weird one for me in that it has been getting better then worse, then better then worse for a few days now despite taking anti-biotics. Some days it is brilliant and appears to be completely gone then others are pretty bad and result in uncontrollable coughing fits all day. No rise in temperature though which is a good sign especially for all the nurses on C1 at Heath Towers who I guess right now are reading this thinking, “Oh No!!!!, he’s coming to stay”. Well let me assure you I am trying my best NOT TO come in and grace you with my presence for while, if that’s okay by you?? It has made things a little strained at times I guess in that some of the things I have been saying recently about regaining some control have gone out the window a little I that I have not wanted to get out and about much apart from things like the Day Centre on Tuesday, which interestingly was a great chance to have a long chat with my “Key Worker” ( although I haven’t quite worked out yet what she does with all these keys) Louise, about a rather interesting training course she has been on recently which was all about coping with the emotional side of both , being diagnosed and living/dying with a terminal illness. There has been a recent extremely successful pilot scheme in one of the neighbouring Health Trusts that has included automatic, immediate referral to a Psychologist at the time of diagnosis which I know personally would have made such a difference to me and would have made things a lot easier to cope with right from the start, instead of struggling on, trying to find this sort of support myself which, in a lot of ways, actually added to the emotional problems as it was quite frustrating setting things up. So hopefully this will be taken on board elsewhere as from the little I have discussed up till now with Louise it appears to be an innovative approach that works. I will try and get some more info from her when I see her again next week and I’ll post a few links to the sorts of things they are attempting to do etc in case anyone wants to know more.

I don’t know. Why do the blogs seem to just go on forever, with page after page? I guess at times there is a lot to tell you, but I will have to try and find some way of condensing them a little, even to help my mother out a little as I know she prints them all out and she is now having to think about having an extension built to store all the many volumes of previous posts, let alone the destruction of the rain forests to provide all the paper ha ha ha!!

Only one more bit of “Breaking News” of which I will go into more detail next time and that was a brilliant day out yesterday at the “Mobility Roadshow” at Kemble Airfield, which was amazingly HUGE and crammed pack full of every conceivable vehicle, scooter, motor home including one Winnebago which was simply awesome and a mere snip at £139,000, so more about this lot later including a few piccies of the new car I am getting.

See Ya!!

What A Difference

What a difference these last few days have been, almost like a completely positive experience, not without the odd fall back or two though to keep me on the straight and narrow. I have continued on from the last blog really and kept trying, rather successfully too, to live for today and attempt to re-gain some control over my life.

I guess the positive input I have been getting from family and friends has had an impact too as they are all behind me in this new approach even if it does mean in some of the cases that they are making more work for themselves, but they loves me I know!!!!! I’ve managed to get out and about a little as well as entertaining at home too. I had a visit the other day from Fav Cous and the queen of the old time music hall days, Aunty Josie and Craig and Jessica who really can no longer be described as kids as they are bigger than me now. They come bearing gifts of Frankincense and Myrrh, well a nice warm Bloomer Loaf and some Juicy Bacon, for my Birthday which I can tell you has been going down a treat since. It was nice to see them all as we don’t meet up that often. Mum and Dad have been spoiling me too and have been up a few times. Even coming up to cook me my tea one day and Dad has done a grand job at fixing my back gate for me. She also brought my prezzy down which turned out to be a Bread maker which just happened to be exactly the same one Judith had bought me too apart from the colour ha ha ha. Maybe I will have to increase my bacon sarnie intake to use up all the extra bread.

I’ve noticed too that the work to put slopping curbs around the estate didn’t in fact start on Monday as was promised but after a few phone calls to investigate and having got a huge apology they have started the work today which is good and should make a difference.

“BREAKING NEWS” I have just come off the phone from the Occupation Therapist. The assessment that most of you will know has been the thorn in my side all this time and has resulted in all the various people fighting on my behalf is actually going to go ahead on 25^th July YIPEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!! The lovely and really helpful OT that I had 2 years ago has just returned from maternity leave and has been handed my case. I remember she was so helpful back then and really did attempt to move mountains for me so I am hopeful of some movement at long last. I will keep you all informed of what happens. I did say I will give her a big kiss when she comes but I’m rather worried now that I might have put her off coming???

I’m off to celebrate with a nice cold orange juice with maybe a little something slipped in if I can find where they have hidden it all.....

See Ya!!

I Could Get Used To This!!

Surprisingly I’ve had a really good couple of days. When I say good I don’t mean it as in the sense of what most people might associate it with such you know that feeling you get when you have come back from a long walk in the countryside admiring the beauty of nature, when your legs are aching because you walked a bit too far but it doesn’t come into it at all and you feel like this glow all over and a sort of sense of satisfaction. Well that’s the feeling I’m having at the moment.

My breathing has been somewhat under control although I guess it hasn’t changed a great deal medically just an emotional thing. I have felt a lot happier in myself and wanting to get out and as I have mentioned in the last few posts actually “Live My Life”. After what seems like a lifetime of obviously not doing this it is a bit of a novelty I guess but having been enjoying it so much it will hopefully continue on. I have started to ask for help a whole lot more too and not attempt to kill myself and in a strange way I am enjoying that now. Doesn’t everyone want to be waited on hand and foot after all if their honest and I suppose I am just taking it one step further. Yes, I have lost the choice aspect of it in some ways but I have gained back some of the control side of things too. The choice is still there too just maybe a different one that’s all.

As a result of this new found approach I have started to return to doing a few things that I used to do a while back such as cooking a lot more. Nothing too adventurous, things like the Bacon Sarnies which goes without question but I have also done what I think is actually my first attempt at a Caramelised Onion and Mushroom and Bacon Quiche which was divine and I also made a couple of Seafood Pies topped with Parmesan Mashed Potatoes which were equally as nice, in fact I’m going to have the last one for lunch later on. It’s the good old favourite, Liver, Bacon, Mushrooms, Onion and Gravy for tea later on which I actually adore.

I also noticed when we went out on Wednesday that the slopping curbs that I had been promised would be done around here by the end of last week had still not been done. So I rang the director and was ready for a fight. To my surprise he stopped me in my tracks. He was saying, after passing through the area the other and noticing this himself he was furious and got straight onto it. As a result they are doing them on Monday and Tuesday next week and he has apologised profusely.

I had a visit to the Dermatology department yesterday too which although I knew was going to be a bit of a waste as there is not a lot that can do for me as in treatments etc except to say carry on what you are doing, I thought that I would at least be able to get the consultant to write a letter in support of financing this Extracorporeal treatment which he is all too pleased to do for me. I’m not expecting that he has any more weight in this than probably the cleaner who I always see moving the mop around in exactly the same spot in exactly the same corridor at Heath Towers every time I go there. I think she might be trying to dig a tunnel out of there maybe??

As part of this new era I have decided too that unfortunately the car is going to have to go, well get changed anyhow. I am finding it now, quite hard to get in and out apart from the fact I haven’t been able to drive it for some months now as I am no longer safe I guess. Some people may say mind you that I never was safe in the first place. I rang Motorbility to enquire what the implications would be as I still have 2 years to run on this contract and they were wonderful. I can change it no problem at all. There is a small penalty charge of £100 but I found out that the £500 deposit we paid when we got the car is refundable pro rata and as such they will just take it out of this and I will get what’s left back to spend on me!!!!! Now where did I put that list???? I didn’t waste any time and got straight on the web and started looking for me new motor. There are loads to choose from. I need a vehicle which is Wheelchair Accessible and also has ample head room inside as some of these vehicles seem to be very cramped. I don’t particularly want to spend any money on a deposit or else I will not get to buy any prezzy’s for me. I have settled for this one HERE. It is the only one that I can find that has a high roof as standard anyhow and the view from the wheelchair and overall space looks good. It should make a big difference all round not least of all for Judith or whoever is with me who will no longer have to lift the scooter in and out and set it up for me. There’s always the fact that I get in such a mess just getting to the car and then getting in and out. All that will change now, well as soon as I can try and get my Dad to come and fix my back gate and build me a bit of a ramp down from the decking outside the Lounge French Doors. That way I can just drive straight from my armchair around the house and up the ramp into the back of the car and all without the need for pit stops and tyre changes too.

Okay I had better get up and pop some pills now I think as no one else seems to want to take them for me, spitefull buggers!!!!

See Ya!!

A Fresh Outlook!!

Okay then after the recent, lets face it, pretty dismal news regarding my present and more importantly future, which I say with some uncertainty, I have sort of discovered that there needs to be some pretty major changes in I suppose all aspects of life to a fashion, whether it be Physical or Emotional.

I have discovered that whereas I thought that I was plodding along trying to live each day to the full and also living for today I have actually been living for the future really. What I mean for example is that say I had an appointment at the hospital in a couple of days time and nothing really planned till then, I would be looking forward to going that I would not make use of the days leading up to it at all, such a waste, especially when faced with the possible future in store for me. So “THIS HAS TO STOP RIGHT NOW” and I have to start to living more for today. And making use of times when I have a burst of energy and knowing when to take a step back when all is not well.

As many of you will know, I have always had this issue with always pushing too hard some times more seriously than others and to be honest I haven’t done myself any favours in that department and have, although unsuccessfully, tried my best to kill myself off whilst doing so on far too many times to think about. Now though my approach needs to be along the lines of thinking, if I was to have someone help me get from the chair to the car, thus taking all the strain out of the action, then I wouldn’t get into such a state as usual and then not actually enjoy going wherever it is I am going. Simple isn’t it?? Well maybe not that simple as I have lived with this for some time now and as they say habits are hard to break. But after all, what do I have to lose?? Only everything to gain. There are after all, always ways to change things to make it easier, say moving an item of furniture out of the way that was blocking my path etc, well you all get the picture I think.

So here goes, I’m gonna give it a try at least. I really want to say, “What have I got to lose” but somehow that sounds quite negative it should be more, “I’ve everything to gain” or in the words of a World Renown Expert in all things Porky especially the Low Salt Breeds, “Onwards & Upwards”


See Ya!!