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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Finally A Smile Has Broken Through

The simple things in life really do come for freet.

Today i have been unable to get out of bed at all, my muscles have been so weak and i just cant breathe because of this infection so instead ive knitted 8 more hats for my NICU units challenge.

Whilst upstairs doing this, my beautiful other half has been up with me keeping me company doing her wood art ready for the craft fair we are going to.

The meaning behind my title is that all day weve just been chilling listening to my itunes list and my lush girlfriend has been singing away...and she is a bloody good singer.

This has literally just gave me both and internal and external smile.

She really is the reason i push to live. If it wasnt for her, her talents and her general love for everything and everyone i would have given up ages ago.

TTFN

XXXX

Because my lady is so talented (im praying this works) ive uploaded her singing...i love her voice!!

Overdone It Again!!

I knew today was going to not only but busy but also hectic and stressful. Thanks to our darling pup, we were awake at 7am so just decided the day may aswell begin. After sorting out the rest of our pets and eating breakfast we headed off to the swimming pool. I told myself I was doing 100 lengths as punishment for eating rubbish food yesterday, and, I done it but it killed me. As a result tonight both my lungs and muscles have officially given up. When we left the swimming pool we had to drive round to the tip and unload a car full of crap that I just can no longer keep since moving in with my other half. It was sad to see many things go, but heres to the future right!? We finally manged to get home at lunch to which my other half set off for doing the final touches to the cake ready for the naming ceremony tomorrow. I on the other hand, read up on some photography and downloaded a new software onto my computer that my sisters in laws purchased me. Eventually this evening I did start helping with the cake though as time was pushing on and I didnt want my other half stressing. I wanted to leave the majority to her though, as shes amazing at these sorts of thinfs and its only fairvas im doing my part on the actual day by creating the memories through photography. As I mentioned, we started the cake at lunch time which was roughly around one ish, and we finished all of half and our ago which was roughly 2230. Ill try and get a picture of the cake to upload for you all to esee over the next few days. Suspiciously, (dont want to build my hopes up) but today and yesterday I have been feeling so hugry and wanting to eat everything insight. Im just craving food soooo much. Im not sure if this is a sign of a positive note, or just because ive had my steroids up again. Lets just say im hoping its not the second thought. Complete change of subject now, but, I never understand why I put my body through so much. Every day thus week weve been busy with something, and now after tiday ive completly screwef my body up again. Im hoping I havnt screwed it up to beyond movement tomorrow meaning ill end up letting my friends down. This and fir next week when me and my other half are having our official first un hotel holiday break with just us...oh and Dixie!! Ive always loved camping and other than camping in the back garden for a tester experience last year, my other half has never done it. I was determind that this year it was finally going to be ticked off my bucket list again as since my illnesses become so bad, ive not been able to go, but this year ive decided to say sod it, I could be dead by the end off the year, I need to start living for today...so thats what im doing. Right, I better go, got a blinking lit to do tomorrow and ive got physio and nebs to do now!! TTFN XXXX

Such A Nit Wit

As you can tell from the title, I still havnt learnt from my mistakes. Last night I had to put my steroids up because I was struggling so much, and today my lung function still isnt good, but that still didnt get me to sit on my arse and chill. I had to take my other half to volunteering at lunch time, but because we wetevearly, we decided to walk around the local park with the puppy. That initially killed me espevially as I decided to walk tjis time instead of using my wheelchair. Once I got back home, I had to sort all the pets foods out and get the rabbits in the run. I then had to have some dinner, do my meds and then try and sort my pc out, all before I had to then go pick the other half from work. Stupidly though, I promise my other half that we could go to a place called Cardinham woods and go for a walk with the pup and also have a 'naughty hot chocolate' because it is so hilly though I refused to have someone push me in my chair so ended up walking again. Safly though we only got about 5 minutes in and my legs were giving way and I couldnt breathe, so we had to turn around and go sit gown. I was gutted. Steroid myopathy and brittle asthma are so dibitating and is slowly killing my independance and freedom. My flash back are also flaring back up again. More than the usual daily stuff. I think its because my body is struggling again and its scaring me for what might happen. Im hoping they will settle down again soon!! My pain has also gone ridiculous. This is my fault though. Because of trying for a baby, I have stopped taking my morphine as I dont want it risking causing any harm to the foetus at all. Im considering asking my GP to refer me to rhe pain team to get things back under control. In happy news though, this week I lost another pound in weight. That means I have one pound and three quaters to loose and ive lost another stone in weight which totaled up, thats three stone since last August, im so chuffed with regards to that!! Well, sorry for the depressing post, I just had to talk to someone and you guys seem perfect. TTFN XXXX

Lots As Usual!!

Time has literally flew by over the last 24 hours and ive really enjoyed it, even if it has killed my muscles. Yesterday, we had to clean out our three rabbits. With me being stuck in bed all week they havnt been cleaned out and had got very poopified. My other half cant do it on her own as shes not 100% with handling them yet where as ive had the one rabbit 5 years now so very much use to them. Other than that really, we just walked the pup around a pond whilst my other half had an appointment and then also walked her around the field a few hours later. After that, weve literally chilled all afternoon/evening and it was great. Today has pretty much been the same. Weve put all the rabbits in the run all day and we took the pup to the field. This time though with walking the pup, because as of today she can now go in fresh water, we took her in the stream at the bottom of the field and she was in her eliment. We didnt think she would go in very well, and initially our thoughts were correct (due to her falling in the pond at 7 weeks old) so my other half with her bright orange wellies, jumped in the stream and started splashing. Dixie was straight in. She was hilarious. She was copying my other half by splashing with her two front paws but then also trying to eat the water that was flying in the air. After this she started digging in the soft mud under the water and then was doing circuit's around us both, in the water, back to the field then back to the water. I really wish I had recorded it as we were in fits of laughter. She also learnt a new trick which was fetch and bring back. Were so proud of her as shes learnt so much for just 14 weeks old. Whilst out walking I saw a perfect composition in my head for a photo to enter into a competition so when we got Dixie home, we grabbed my camera, went back to the field and captured it. That photo has been submitted as of tonight so ill get the results in 3 weeks so fingures crossed. I also booked another mini break for myself and the other half for May time. Its another camping trip in Devon. It was a voucher on group on so I couldnt resist really. Got a fair few mini breaks coming up whichll give us something to look forward to. We also had our amazeballs moses basket/ rocker arrive today. It wasnt meant to get here untill next week so we were beaming when it arrived today. Its come all the way from America as they dont sell them in this country. Although we dont have a baby as of yet, I couldnt stop myself from buying it. We just have to store the thing now ha. TTFN XXXX

A Few Weeks In!!

A little hectic has to be said for this first few days of 2014 BUT I have enjoyed it - kind of.

Day one started off not so good as my lovely lady had suddenly picked up a tummy bug and from 3 am for a good 12-14 hours she was vomming none stop, felt so sorry for her as she was stuck in bed all day being poorly. Thankfully by the nexy day though she was a lot better.

To start off the new year, we decided that we wanted a fresh start so we have redecorated our room. Annoyingly it has taken a week and me ending up being poorly myself and in bed for a day,but it now looks stunning. We have a paint called malibu beach on three of the walls and on the fourth we have patterend wall paper that is of a charcal colour and has a variety of different birdcages on with yellow birds within them. Ok, it sounds a little strange but it looks stunning. We also now have our lush new canvas painting on the wall that our lovely sister in in law and her girlfriend has made for us for christmas and we also have a butterfly lapshade with very similar bedding that my other halfs parents got us for christmas. So our room is now set up nicely for when im having my rough days and cant leave my bed and it also just generally looks stunning to walk in and see.

I had an appointment today with the maxifacial team again, was meant to be getting my biopsy results but sadly because of the time of year that I had then done, they have been delayed a little. I have to say, not what I was expecting to hear when I walked in there so sadly have to wait around another week or two before I know what the lump was that I had growing in my mouth.

Generally all else in my little life has been great so far this year...touch wood. I have an appointment with ny new lung team in Plymouth on Wednesday so that could be a challenge, to which im sure youll hear about!!

I also completed the start of my photography portfolio today, the 9 photos that I have in there really do look stunning and for once I am proud of the work I have done.

Oh and its official, my sister is pregnant, and I am going to be the best aunty EVER of course lol.

TTFN

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