Friends

When life is a little down, all you really need is friends.

Yes you guessed it, we managed to get out and meet up for lunch with our friend and her son.

We didnt manage much else before that as i was so exhausted.

On our trip out though we managed to post a friend a present which we are praying she will het before shes admitted to hospital next week, we purchased a fair few more baby bits for my sister ready for the baby but these arnt clothes, these are more essential stuff like wet wipes, johnsons baby stuff, sudocrem, nappy sacks and more little bits like that. We also got another lush pastel wool and some ribbon for the baby blanket im knitting once i finish my 6 hats a day.

To say im exhausted now though is a ahuge understatement.

I feel really weak and i cant actually even lift my arms anymore so im a little gutted. I honestly think that this weekend is going to be for recovery and that only.

TTFN

XXXX

Frown Isnt Upside Down!!

Ok so im still strunning to see light at the end of the tunnel.

Everytime i think something fantastic is happening, I get knocked back down!!

I had the doc ring me up on Thursday because it seems we are having the same battle as last time for keeping my aminophylline levels up so i am now on 600mg a day to see if that does the trick.

Today my other halfs sister arrived back in the UK after a week abroad on holiday...next thing we know weve got a text stating they have our invitation and she then starts getting nasty that weve not invited them to the ceremony. 10 minutes later i get a facebook message from her girlfriend saying shes not coming to the meal weve invited to because she cant see the justification in taking time off work to come down for a meal they have to pay for, so i reminded her that there doesnt need to be a justification, we just wanted our family to celebrate our day with us...i guess for some thats a hard concept to grasp!? I wonder if i could tell them that i dont see the justification in doing their wedding photography for their wedding next june!? I wont because im not nasty. I want to be there for their big day even though it means travelling 300miles and 4 hours to get there, then paying out for a hotel and then travelling back...never mind the fact that i am disabled and struggle to drive 20 minutes!!

Anyway, rant over for now.

In other news, im a little concerned about my muscles. To those that dont know, ive been diagnosed with proximal myopathy which basically is a muscle wasting illness from being on long term steroids for my asthma. Its now getting to the point that im struggling to hold my head up, my neck musclsa are really starting to struggle and im having to wrap my V pillow over my shoulders and under my head to support myself. This is the last thing i want. This is another kick in the teeth for being disabled. I know my consultants had warned me but they said years to come like 10 years...not 10 months down the line.

Im currently at mums now though. We needed to get out the house. The stress is getting to much and its making me even more depressed. It also helps mum and my sister out as she was meant to be dog sitting for our mum whilst shes at a friends wedding but with her being 31 weeks pregnant, having a hyper dog running round your feet isnt wise, so weve braught Dixie with us and were looking after the 2 dogs.

Well, im off to sleep now as yesterday anoth migraine set in and its hanging around again.

TTFN

XXXX

Loosing The Will!!

These last 24 to 48 hours mentally for me have been a huge struggle.

Im still struggling to see the future. Im struggling to see what the point is. My health is just going to get worse, i dont want to end up like a vegetable and having everything done for me. Thats no life. Especially when ive had such a full on, busy, outgoing and active lifestyle up untill now.

Some people may say but think about what youve got and what youve achieve so far or even, there are worse people out there...yes thats great but for me, this drastic life change has hit me hard.

How would you feel if youve been told, roughly 10 years time you could be severly disabled or that you cant carry your own children or that if your partner was to have children you will never be able to run around with them at the park etc etc...i have been told all this and the reality behind it sucks.

5 years ago, i was working at bristol childrens hospital as a health care assistant and i bloody loved my job. I also had an acceptance to Surrey University to start my paramedic training and I also got accepted by London Ambulance service as a student paramedic. These last two where to be started after i decided to take a gap year and see what the hospital enviornment was like...it was then a few months later my lungs took a huge turn for the worst ... and then i lost everything. My career, my flat, my life.

I see people running in the street keeping fit and i think to myself, 5 years ago that was me. I would go running every night and then 3 times a week i would do a 6 mile walk followed 40 lengths in the swimmingpool. I can barly walk 30 yeards and only do 20 lengths if that in the pool.

Its gutting.

I hate it.

Why does life have to be so cruel.

Sometimes its difficult hearing other peoples issues to. When you have so much going on in your own life and your own head it makes you feel that little bit worse. Not only because i cant help them but because i know how they feel. I know what its like to have such a drastic life change.

Someone a few months ago passed a comment on facebook to me that i thought was extrermly harsh considering what i use to do and what i try and do now. They posted a photo of a stunning hotel they were staying in and i simply said, you may have to share some of your money so that we can have such lovely holidays...there response was - not being funny but we work hard, earn our money and deserve a break. This tore my heart to shreads as like i said before, i was in a job etc and persuing a massive future. Even now, im still doing photography so its not like im sitting on my arse.

Its things like this that are sticking in my head. Tearing me down and adding to my already complicated PTSD.

My other half still doesnt know the full story of whats going on in my head. It scares me. I cant scare her too. Thats 100% unfair.

Who knows, tomorrow may be different. Ive tried keeping busy today and knitted 5 more NICU hats and the sleeves for the baby cardigan im making. I also had a follow up appointment with the maxifacial specialist after i had a tumor removed from my lip just before christmas...and even this news wasnt perfect as he told me it will grow back and could turn into cancer at any point. Fab hey!!

TTFN

XXXX

Give Or Take

Apologies to all my followers for not blogging last night but as you know my other halfs dad is currently in hospital and as no one else apart from me can drive I have been running around like a headless chicken. As a result, last night I was really poorly and just went to bed. Of course I dont have to do all this running around, but the way I see it is that when im next in hospital they would do the same for me. They would run my other half up and back from the hospital to visit me, they would bring me items I need and they woyld try and keep my spirits up so in my head it means I have to do the same for them. I wish I didnt think like that but I just cant see any other way around things. We think though that her dad may be home later today but annoying I still have to drive the 45 minutes to the hospital and then the 45 minutes home again. I also have to run my other half back to the same hospital tomorrow as she has an appointment and then I have to drive to Taunton on Wednesday which is 2 and a half hours to get there for a hispital appointment for myself. I wish I didnt drive. It hurts me so much. My muscles have gotten weaker and weakers because of the extra strain on them and now I literally feel like shit. I guess these things ha e to happen though. Thats what families do, they come together in times of need. 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

Todays Journey

A nice early start again for me today...thanks to Dixie, but no harm done, just meant we could walk around the feild twice. Firstly though, its weigh day and im pleased to say im back on track with a 1lb and 3/4 weight loss. Ok, its not a lot, but its still a loss and im pleased as punch with it. I had to drop my lovely lady off at volunteering for 12. When I got home, a had a quick bit off dinner with Dixe and then headed up to our bedroom. My other half noticed yesterday that Dolly our goldfish has come down with white spot so I had the challenge of isolating her from the big tank where her and Dot live. I then had to scrub the big tank and do a water change to make sure we caught it in time before it spreaded to far. Heres a picture of the finished piece ha

Following the fish tank sorting I decided to get two of my glass cabinates on the wall that holds my china ornament shoes in. I wanted to surprise my lovely lady for when she got home...and off course I did. I then started finishing off the uploading off photos to CD ready to give our friend tomorrow following the naming ceremony. I also went online to Asda to get 11 photos printed off to add to my portfolio. Hopefully ill be receiving them by the end off the week. After all this was done, I decided to sneakily go into next doors hedge and snip 12 of their daffodils and I put them in a jar of water for a little treat for my girlfriend. Thankfully with living in the countryside, there are so many daffodils I dont think theyll ever notice. This evening I done some physio on the trampet to try and get my legs working that bit more, and then we set off for the feild again with the pup. I have to say, she really is catching on super well with her call back. Really pleased with her. I havnt spoke to my nand since before I had the flu, which as you know was a long time ago now so I felt mega bad. I am a little worried about her though, as she came down with a virus the same week I had the flu, and shes just getting poorlier and poorlier. She has an immune deficiency illness called shrogrones (ive spelt that how I say it just to warn you) so each time theres a cold going around, like me itll hit her hard. Although it was fantastic talking to ger, it never stops me worrying, and to make it even harder for me, she lives in Manchester so I cant pop round and make her a cup of tea. Well, fingers crossed all starts picking up soon, but for now, I must get back to the tv, Revenge is on!! TTFN XXXX

Todays Activities!!

With starting to crack down on my weight this week (to which was spurred on by my 2 stone weight loss last year) I have totally changed my diet and reduced my meal portions by half.

Annoyingly though because of my muscles, joints & lungs I cant do a lot of exercise. Actually pretty much none. So today, me and the other half plus her mum decided to bite the bullet and go swimming. This swimming pool is fantastic, you pay £3 each (which is rediculously cheap) and we seem to always be there on our own which is lush also.

I only managed 8 lengths and then sat there kicking my legs. But the other two enjoyed their selves and done a lot more lengths.

Im hoping that with having a bit  of exercise in my life now, itll help to maintain my muscles and also help to burn this extra bagadge that im carrying around.

Watch this space though, I could be in agony tomorrow and not be able to move anywhere.

For now...

TTFN

XXXX