Moving Forward

Yesterday ive finally got to a pain team appointment. Ive been having chronic on going pain, not just for my hip but because of the myopathy from the steroids. Unfortunatly at present no intervension is possible unless its with pain releif. Ive been maxing out on paracetamol, tramadol, codiene and oramorph with little to no effect so now ive been started on a tens machine which is hooked to my hip 24/7 and i turn it on for 1.5 hours every 4 times a day. Ive also been started on bupanorphine patch ontop of everything else. So far theres been no change other than the bupanorphine knocking me out and the tens machine causing pins and needles down my leg. My life seems like such an adventure lol.

Ubfortunatly, my friend who I mentioned a little while back, has remained in hospital and had started rehab and moved to a ward, sadly though today she has had to be taken back to intensive back and has been reventilated, really hope she continues to fight through this nasty infection that is still pumping through her body.

Weve had regular updates with regards to Dixie being at her foster mums. Initially we thought we have had to put her in the kennels as she wouldnt stop crying us which was resulting in noone sleeping. The foster mum had spoke to her husband and they decided that because she wasnt like a normal foster dog they looked after, they would let her upstairs in their sons room with him and suprise suprise, shes aparently the perfect house guest which is amazing to hear. So much so that the foster mum even felt she could let her off the lead over the feild today. Its lush to hear that shes doing so well. Just hope she remembers us when she comes home.

Thats all for now

TTFN

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Overwhelmed

Just woke up after falling asleep and its all abit weird in my head. So much has happened and its now getting to me.

Firstly,my friend i told u about is getting better. Shes now out of the critical stage and back with us talking and growing strong. Thank goodness. So pleased as was ubber worried.

The next thing being that Dixie has finally had someone say and be willing to foster her whilst we are in our temp place. Sadly it is 3 hours away but weve just got to be lucky that shes found a home which equally means we dont have to give her up long term as that would be heart breaking.

Next up is this bloody flat. I hate it. Its horrible. Its not ideal for me at all. To top it off the landlord is an ass. Weve begged him for Dixie to come with us and even said we would pay for cleaners to come in when we leave but no. He refused to sort out the water in the kitchen as for the last week weve had none. So i had to get on the floor to look and sort which is never good as i cant get off the bloody floor so my other half had to help me. Next up we went there to day to drop more stuff off and the bloody bay window roof is being ripped out and we hadnt been told. Im pretty sure we had to have 48 hours notice and yet we had none. We also still havnt received our electric key to be able to put money on the electric. We got told last wednesday 24 hours and we will have it. But no,again nothing. Which means weve £3 on the meter, a freezer full of food and i cant neb. Grand. It all just seems a night mare.

All of this and im also shitting it about money. I know we will be fine but im a huge ocd worry bean about money to the extent i have a book, write what goes in and out and what weve left for the month and then each day i write how much has been spent and then calculate how much remains. At the moment it seems like we are £200 better off living independantly but weve not hade the correct amount of bills yet so all that could change.

Im also confused as to whats happening about my immunology infusions as ive not been contacted and its been nearly a month now.

The wedding is coming up and i know longer have any idea of what is left to buy as its all in stupid boxes

My other halfs 21st is also coming up and im worrying that we wont have the money for me to make it special for her.

To tope it off, today it seems like my pharmacy wanted to kill me again. Remember the error a few weeks back about my steroids. Well i made a complaint and that got sorted BUT today, as usuall walking out the door i checked my drugs so i didnt drive all the way home and see a mistake. I opened the bag and saw the words Sando-k and though what the heck i dont take that. I take phosphate. Took it back in and said er uve given me the complete wrong drug. Her answer was "i though it was strange when i was second checking it" i replied saying well its a gokd job i know my drugs else this time next week i could have been dead. Its not like it was a simple error or omeprazole or anything it was a potential fatality error. Its shocking.

TTFN

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Muscles

Finally we managed to go out today with our amazing friends to a place called siblyback lake.

It was amazing, the sun was shinning and it wasnt to hot so it wasnt hell to breathe.

Sadly though because life sucks when i got home i couldnt breathe. All i done was walk up the stairs instead of using the stair lift and my sats plummited to 85%. So straight on the nebs i go.

I have then slept all afternoon since.

Once i woke up, my muscles have completly gone. I literally cant sit up. I cant lift my arms at all and im generally feeling like a jellyfish.

I absolutly hate having this disease.

Its utter shit!!

TTFN

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Uncertainty

Its been a few chilled days here in our house hold as weve had a a bit of a rough time health wise for me and weve had a lot of paperwork to fill in.

With regards to health, since Alton towers ive had an infection *suprise suprise*. Sky high temperatures, chest flaring, sats and peak flow down. So i went to the doctors last week to catch it early, steroids went straight up and i got put on strong course of doxy for antibiotice. I done a sputum sample to catch which bug it was and although i got told i just know its a type of pneumonia again. Today i woke up gasping to breathe and sats were back to 93%. I dropped my steroids on Monday as it had been 7 days and i didnt want them high again but with an emergency visit to the gp again today they put them back up for a further 7 days and given me amoxicillin and another course of doxy so fingers crossed i start feeling better again soon. Ill do another sputum sample as sokn as my airways are open enough to cough a reasonable amount up.

With regards to paperwork, since my partner had the carers service team out for her last week, weve filled in a form to apply for another grant to be able to have holidays or hobbies whilst im in the state i am. So fingers crossed we can get this.

Weve also had the paper work through from the council for a welfare assessment. It was 4 pages long and i also sent in an addition a4 piece of paper of extra evidence as they didnt provide enough space...talking of rubbish space, they asked for a list of my nedication but only gave one line...an i had to provide another piece of a4 paper filled from top to bottom with my drugs...think they will have learnt their lesson there!!

Well, tomorrow we are going to try and venture out to Liskeard to meet onet of our very good friends and their son. I wanted to get some more fluffy wool for a personal project im knitting and we decided to meet up with them too. Ive warned them i have an infection especially as her sokn is only 11 months so to be nice i will be wearing a mask so that heres no risk of me passing on my pneumonia!!

Aside from all that paperwork, i have yet another form to fill out for a grant through the charity called the muscular dystrophy campaign. I had a re referal done with regards to my self propelling wheelchair but sadly i dont tick all the boxes to get any form of electricalness for my current chair so theyve put me through to the charity. I just need an assessment and letter wrote on headed paper saying i would be a suitable candidate to be given a grant to and i can fill in the rest of the form. Really praying i can do this by the end of july as their next meeting is augst 8th.

Well, fingers crossed i can get out tomorrow and i get my assessment.

TTFN

Easter

Firstly I would just like to wish everyone a happy Easter and I hope you have all had a great weekend. For me, Easter has been very busy and very tiring. On Friday afternoon I had my old work friend come down from Bristol to visit us. Initially we didnt do much, just cooked some tea, have a massive catch up and then went for a walk. We had found another footpath that led us to the section of the camel trail that is at the bottom of our road. It was lush to see yet another different walk right by our home. On Saturday, we were aiming to wake up at 0730 as thats what time Dixie normally wakes up. But no, not today. Today she decides she wanted a lie in so of cour without our alarm we all had a lie in. Thankfully though it wasnt that drastic. All we had to do was my medication, make a picnic and feed our pets and jump in the car as we spent the day at "The Lost Gardens Of Heligan". Myself and my other half went there a few weeks back when we were camping but my friend has never been and as it is a stunning place we were happy to go again. We had been rather lucky as the weather was fantastic, sun all day with a slight breeze to stop us from over heating. I was rather proud of myself as I had managed to walk some of the nature trail but sadly it killed my legs for the rest of the day meaning I then had to be in my wheel chair. Me and the girlfriend were hopeing to be able to buy another gorgeous flower but they had none we liked so instead we got and eco friendly bird feeder and three packs of seeds so were going to attempt to grow our own flowers. Should be interesting.after a lush day out, we got home and had a scrummy coffee and some tea and then decided to go back out again. I drove us to another part of the camel trail just outside of Bodmin and we took the dogs to the river down there. My lovely lady showed me this super old steam railway line, admittedly, I fell in love. I love any old fashioned steam transport, it abdolutly fascinates me. Sunday we were a little disappointed. We had planned to go to the beach with the puppys but the weather had other plans. It had poured down all day. That didnt stop us from going on an hour long walk with the puppies and my friend though. When we got back we were both freezing and drenched. All part of having a dog though. Amazingly we had arrived just in time for our easter sunday roast to which of course we had lamb. After another massive natter and a coffe though it was time for my friend to travel back to Bristol. It has been a massively tiring weekend for me and im more than exhausted, but the fact that ive had a friend visit ne who ive not seen in a few months was great. Last night however I couldnt sleep very well at all. My PTSD was really really bad. My flash backs had hit its altime highest and it was terrifying me. The thought of having another asthma attack really is scaring the shit out of me. Im terrified about dying and im terrified itll be my asthma that kills me. I really hope my councelling can start soon as im really not coping very well with this at all. Im little scared beyond belief. Hope youve all had a good time though. TTFN XXXX

Wowzers

Ok so for me, rather a lot has happened yesterday and today which brings me to my excuses for not blogging last night. Yesterday, we had planned to go to the beach because Dixie loved it so much. We were really thinking that it would be mega crowded because its half term and the weather was lush...but we were mistaken. There must of been 20 people maximum there. Dixie was absolutly amazing and as we took our shoes and socks off at the car and had shorts on, we were able to go in the sea and she merrily joined us. My other half got scared after a while though as she started to see crabs (even though they were dead) so she climbed out of the sea and strolled along beside me. We had to have a quick dash up to top half of the beach because Dixie started being sick. We gathered this was because she drank A LOT if sea water and for a little belly like Dixies thats bound to make you vom. After we wrapped her in a town and gave her some clean bottled water she was just as she was before. Perfect. Later in the evening, we decided to take Dixie on her night time walk. We decided to take a new route that our next door neighbour told us about the day before. We were super excited as there were feilds, woods and streams, all of which is Dixies heaven. We started our walk at 1844. 2 hours later, after climbing over trees, under tress, through vines, and along wrong paths that led us to someones back garden, we finally made it home. I instantly collapsed in bed in tears, I was in agony. The pain it had caused in my joints and muscles was undescribable. I had to have my maximum amount of prescribed morphine and try and get some sleep. ( so thats my excuse for not blogging last night.) Today on the other hand, my plan was to rest and recover from yesterday, untill I went down to feed the three rabbits. Gizmo and Mr Spice are dandy. Norbert on the other hand had a 3minute sneezing episode. Im not sure how many of your are rabbit aware...but rabits arnt meant to sneeze unless there is something hugely wrong with them. With rabbits, they hide their illness as best as they can for as long as they can because if they were in the wild they cant show weakness. I quickly gave them their food and rang the vets we are with and they made us an emergency appointment. After seeing the vet, it turns out that Norbert has got an upper respiratory infection so need antibiotice twice a day for 10 days and has had to be put in isolation from the other two rabbits. The vet said we were great and prompt for getting us him as if we hadnt of noticed the signs of him being poorly it would have travelled to his lungs very quickly and potentially have killed him. As my other half says "hes just like his mummy, and its a good job we know how to sort colds and illness out when it comes to our lungs" lol. When we eventually got home, we had fpund out that Dixie hadnt eaten any food all day. All we could think of is, please not another trip to the vets. We tried her again at 1730 and she ate a snall amout. So we had bathed her and snuggled her...and then she started to crunch on something. Being absolutly baffled as wed given her nothing, I quickly put my hand in her mouth...and there it was...another tooth. We have managed to find two of her teeth now and have kept them in a little pot. No wonder the poor pup hadnt been eating all day though. (Oh heres her tooth)

Well thats me for now. I may not be here over the weekend as I might be having a friend of mine coming to visit from Bristol so ill be more than exhauted. Hope you all have a great easter...dont eat too much. TTFN XXXX

Something New

When I went to asda yesterday, I was gutted to find out that they had sold out of easter biscuits...I mean come on, its still a week away. To resolve this, my lovely girlfriend said that as shes never made them before, she would love to give them a try and blinking heck they tasted good. We have been controlled though. Weve only shared one between us for today andvwe have four more between us ove the next few days. I was mega impressed with how they turned out as shes never made them before. What do you think?! :

Even though it was only half a biscuit that I have eaten, I felt really bad so punished myself...and todays punishment is that I walked around the feild 4 times at three different stages of the day. To be ho esr, I think I have the beginnings of an obsession going on. Im so fixated on loosing weight and its now got to the point im now weighing at the beginning and end of everyday. I really dont know what to do. I think its started because I had climbed up to 16 and a half stone and so many doctors have told me that my weight would make my asthma worse. For me that was enough to scare me so I guess I have to loose it. After our second walk of the day, I was in agony so had some more morphine, snuggled with my lady and our pooch on the sofa and watched a film. Todays film was "exit himanity". Although at the beginning I though it was a really bizarre film, I soon came to liking it. Its weird because it has a narrator ever now and then. But it explained the in depths if what was going on just incase you didnt pick it out whilst it was made visually the first time. So for me its a film with a thumbs up. In crappy news...I think I have another infection brewing. Im getting a lot more puffed out, I have pain in my left lung and I am rather bubbly with my lungs. My temperature has only raised a small amount so id feel like a fraud going to the GP at this stage. Just hope it doesnt get to bad by next weekend as we r supposed to have a friend staying down and visiting is. Only time would tell I guess. TTFN XXXX

Coffee, Friends And A Stroll

Late last night we had a great friend of ours text us to see if we would like to go for a catch up and a walk either today or tomorrow. As we r bust tomorrow, we decided that today would probably be best for us. She left it in our hands for time and place so I chose Cardinham Woods at 11am The timing was a little optimistic. I had such a rush night sleep, fell back to sleep at 7am and then woke up at 9. By the time I had done my meds, had breakfast, feed all the animals and do a picnic, admitidly we were a little late. Thankfully our friend was late also as her 8 month old son decided he needed a nap. Phew. When we all eventually got to the woods we had a sneaky "naughty hot chocolate" which is chocolate toped with mini marshmallows and cream-yum. I when went for our stroll (to burn off our drinks of course ha). I was so pleased as we all agreed to do the flat gental route so that could try on just my crutches instead of my wheelchair. The walk was 3k so it took us roughly 3 hours to get around because I needed to keep stopping, having a seat and catching my breath. Still, I am pleased with my achievements. Once we had our stroll, we then had our picnics and even more nattering. Got to love meeting up with friends. Certainly keeps your brain going, and the great thing is, its one of my other halfs friends originally so not someone I know through auk or one of my illnesses. Despite this, she is fantastic and really looks after me and makes sure im ok when we are together. When we got home. I had about an hours rested with being topped back up with morphine and I attempted to make tea. Sadly I had to give up around 1/4 of the way through as I just couldnt cope any more. Thankfully my other half was happy as usual to carry it on, which im glad as it was an experimental tea of fizzy orange chicken from "the girl called jack" book...and I have to say it was bloody lush. This was then finished of with a nice small portion of rice pudding as a suprise. As soon as the dishes were scrubbed, we went off on another stroll around the feild with dixie to keep up her routine. Now that im now I. Bed again I am bloody shattered, but to bring the final greatness to the end of the day, we found one of Dixies puppy teeth on the floor. Its the first one that we have seen, although we know shes lost more, just not sure when or where. Great times. Hopfully ill sleep well tonight, but we will see. TTFN XXXX

Excitement!!!!!

Ill get the boring daily stuff out the way first, before I get through to the good stuff. Last night I had a nasty allergic reaction again, my face blew up, was swollen, red and rashy and this tracked down my neck, chest and arms. I had to take 4 antihistamines to get it under control. Thankfully it wirked else it would have been an epipen job!! Up nice and early again to be able to get Dixie around the feild and then get my other half to her new healthy wellbeing class. For us to do medication, physio, breakfast, and pet feeding we had to wake up at 6 and even then we left the house 5 minutes late. Hate that our mornings take so long. After I picked my lovely lady back up, we had arranged for our friend to come around with her little man. This was mainly so that I could give her, her CDs from the naming ceremony of her son a week saturday ago. We all had a slice of cake that she brought around and had a good old natter. I was a little gutted though because I couldnt have a cuddle with her little man because my muscles were so weak I couldnt stand or lift my arms so it would have been far to dangerous and unsafe. I was happy to pull faces and make silly noises to him though. Once our friend had left, we waited in anticipation to hear what she thought of my work. I was praying that she would like them. In the mean time though, we kept ourselves busy snuggled on the sofa watching frozen, which might I add is a blinking good film. At about 1930 tonight, I recieved a tad on my face book which was - "Just got the photo's back from my very talented friend Charlie from Charlie_Warlie Photography, twice now she's taken photo's for me, they are truly beautiful, capture the whole feeling of Tre's naming ceremony. I have laughed, smiled and even had a few weeps at the amazing images. Thank you so much Charlie, if you every need any recommendations I will sing it from roof tops!" I was both overwhelmed and overjoyed with this response. I always doubt that my work is as good as what people say it is, but I guess that people really do like it. Well that was my exciting news!! Untill tomorrow... TTFN XXXX