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

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

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!!

Wants Life To End

Literally, after today i really cant take any more.

All weekend ive been  spiralling further and further down because of things that are going on and im getting toy far into my depression im now struggling to pull myself out.

Being at mums was good in the fact that it was just me and my beautiful girlfriend but in theory it was just putting off the inevitable.

As soon as we got home, the shit literally hit the fan.

Argument kicked off, we were called ever name under the sun and we were made to feel like utter crap

And guess what the cause of it was...yup you got it, the happiest day of our lives, our  wedding.

My family have suprisingly been very supportive and happy for us. My partners on the other hand have really really kicked off, to the point theyve now told me im no longer doing their wedding photography and my  partner is no longer their bridesmaid. All this is because they arnt coming to the "ceremony" section of our wedding.

We are both so upset.

Its our day, we dont get why we are being treates like this.

Ive now contacted the welfare team for the councel explaining the urgency to get our own house as i fear that if im kept in this situation i will try to end my life again. They are just seeing what they can do to help and then will get back to us.

In good news though, ive now completed hat number 150 so another box is complete and ready to send.

TTFN

XXXX

knee And More

We had a nice early start this morning. Not. I had to go back to Truro to see the consultant about my knee. Sadly he has told me that i have damaged my maniscus. He is giving me two more week to rest and allow the swelling to go down and the pain the get better. If things are all the same then i have to have either one or both of the following things, an MRI and or seeing a knee surgeon. As a treat we then went over to costa. Weve not had very much time on our own recently out and about so we took the opportunity whilst we can...and it seems costa were mocking.me c; Once we got home, the weather was being great to us so we took the opportunity to let our butterflies that weve grown out into the wild. It was amazing. We held them first and really got to have a nice close look at them...it is something that we will be doing again. 100%. To have seen them go from tiny caterpillars right through to stunning butterflies was fantastic to watch. Youve got to love nature Following this, we picked up Dixie and i drove us to the feild just up the road where we let her off the lead and chucked the ball around the place and gave her a great run around. It was fab to see our little pooch out and about again as ive not been able to do it in ages. Ive also decided that me and my girlfriend havnt had a date daya in FOREVER. So weve arranged it for tomorrow where we aret off to the cinema to watch malificent. I have also completed hat number 79 today. Yay. Ps...my internet is being mega slow so as soon as its come back to the 21st century, i will be adding photos to go with this post. TTFN XXXX

Anything Else Want To Come My Way?!

Sorry for not posting yesterday but I was so overwhelmed with information I just couldnt bring myself to sharing it.

I was at Musgrove park hospital in Taunton for a MRI on my hip.

I had to be there for 0920 in the morning as first up i had to have a massive needle poked into my hip joint again to have dye pumped straight into it. This was done under xray guidance. Initially all was going ok, then suddenly I felt very sick, went mega dizzy and from what i can gather, the colour drained from me and i went spaced out. Next thing i know both the nurse at my head and the consultant injecting me was asking if i was ok.

The whole team on this first stage was fantastic.

Following this i then went round to the MRI scanner. I got told that i would only be about 10 minutes...2 and a half hours later im finally back with my other half who had been going frantic and worrying mega because i had been so long.

off we toddled to the cafe though where i had a coffee to wake me up again for the journey back home. Fingers crossed itll only be a few weeks and ill have the result and find out what treatment i need.

Once home i had to ring my GP to update them on the new drugs ive started and i also wanted to check both my sputum and blood tests that i had done on Monday.

I was so pissed. The receptionst told me that yes the result were in but i had to physically come in to see the doc to discuss the result...and the next nearest appointment was 3 weeks away. I obviously refused this and said ill sort something, but in the meantime could the doctor ring me so i can tell them about my new medications...cheeky me then mentioned the blood results to the doctor when they rang me back and bloody hell im friggin glad i did. It was with regards to my phosphate again...and it remain critically low. Ulyour levels are meant to be 2.4 and above...mine was 0.6 so its no wonder im struggling so much so ive now been started on phosphate supplements and need regualr blood tests

As youve probable guessed following all this had 100% exhausted me so i went off to sleep...only to be woken up at midnight having a massive allergic reaction...gradually throughout the day i had been getting itchier and itchier and then by midnight i also had a full body rash. I could put my finger on what was causing it annd initially i thought it might have been the uniphylin...with taking this mornings dose and having no reaction it then clicked, it started straight after i had the dye put in my hip...and had been getting worse throughout the evening making me feel shit, so i guess thats another drug i can no longer have. Perfect.

I woke up this morning in agony though. I know the consultant warned me that with certain people, depending on what hip injury they have they can have bad pains through out the whole leg for the next few days..mand boy was he right. I could barly walk to day and i cant bend my knee without crying out in pain. I just hope it doesnt hang around.

Today i have officially made 35 baby hats so my first NICU box is complete. Im going to do another fair few amounts of hats though before i send them off as i want to get a great picture to send into asthma uk to show them the progress...please look through my previous blogs to find my just giving page...we really need more donation!!

TTFN

XXXX

Flipped Around

Everyones entitled to the otherside of the story, the good, the oppsite, the happiness... Well im glad you said yes because today has benn mine and my girlfriends day. Finally. For me, I have knitted 5 more baby hats which make 24 in total and on 4926 more to knit. I have also now raised £110 for AUK and I also managed to get out in my wheelchair for a stroll with my other half and Dixie. But thats not all- my amazing girlfriend has also had great news. Since weve change our diets to being beyond healthy and also stepped up the exercise game, her cholesterol levels have dropped. I was starting to get really worried last year as her level came back at 7.1 which is extremly high and meant she could literally dropped dead from a heart attack or stroke at any point. Last week she had this blood test repeated and her level is now 6.4. Ideally we need it to b at least 5 and even then thats at the higher end of the limits. So we have a little more work to go, but knowing that what we are doing is correct, and that her risk of dyeing from a heart attack has been reduced, we are that little bit happier. Now just to continue our fight with healthiness.I also managed to get my old phone changed over to allow an orange sim to work in it so she also has a nice new smart phone to which shes never had one before. Excitedly as well, the 5 caterpillars that we have been growing for the past 11 days have finally grown into thir chrysilists (please excuse my spelling). We have to leave them 3 more days in their little tub to allow their shells to harder and then we need to trasfer them to their new habitat where we will look after them for 14 days so their wings can strengthen and then we will release them. Being able to help the enviornment gives a sense of happiness in a different form. One you cant explain. Well, I am off to plymouth tomorrow for my lung review. Im praying I can get more treatment. Better control. We will see as only time will tell hey. TTFN XXXX Ps, please keep sharing my just giving page and also fly by with a donation. You would make me so happy. https://www.justgiving.com/Charlie-Hockaday-Williams

Busy Bee

Alarms should not have been inveted. I hate them. I had to wake up early this morning because I had to go to the GP to have blood taken. I initially thought this day was going to be hell because the steroid nasal spray I ordered last week hadnt been authorised by the doctor. Its meant to take 24 hours, im currently on day 7 so now and urgent message had to be re sent to the doctor. I then went to log in to say I had arrived for my bloods - and the computer crashed, so I cued up and had to register like the good old days...the lady at reception was being so slow that by the time it was my tern, it was then showing I was ten minutes late. Not impressed. I should have my blood tests by Friday though and we will be able to see whether im going to need more medication for my phosphate. When we got home, as I was down stairs, me and the other half decided to finish the run we had built so that our three boys could finally run around again. We are so impressed with our handy work, what do you think:

After this I had to drop my other half into benardos so she could do her good deed of the week and I went home to bed as I was exhausted already...so much so I fell asleep untill she came home again which was roughlu 4.5 hours. Whoops. Its ok though, I made up good time by knitting 3 more baby hats this morning. It is coming along quickly now. Ive completed 19 altogether now and I have another potentially 2 people donating more wool to me to complete my challenge. Tonight I made my smallest hat so far, here is a picture of it next to my ventolin inhaler for a comparison:

Please continue to support me by donating just a small amount and also sharing my just giving page: https://www.justgiving.com/Charlie-Hockaday-Williams Tonight me and the lady have also put a menu together for our wedding meal and sent it back to the hotel we want to go to for pricing so hopfully by the end of next week we gave get our invites sent out. Im day as you can see has been rather scatty, but it has exhausted me so much that I am just finishing my physio and im off to try and sleep. TTFN XXXX

Cant Wait

Last night myself and my partner bidded on yet another 3 properties with in Cornwall so that we can get a place of our own. Thats 4 now in total. Im praying so hard that our dreams come true pretty pronto. The reason I say this is because my other half has reduced her happy pills (antidepresents) to one a day because as you know we are trying to start a family and these tablets at a higher dose can cause harm to the unborn child. Annoyingly though, a few things have happened over the last 24 hours to which has made here very pissed off, agitated and angry...she has told me that she has felt low and not know how to control her emotions. The reason for this annoyance is because of her parents. They still remain to treat her and me infact as a child. Not being funny but im 23 and shes nearly 21, were no wgere near children any more so we dont need to be spoken to like shit, we dont need to be asked every five minutes where we are going, what we are doing and why we are doing certain things. We need our independance. We had a great day out at a national trust place this morning where my other half kindly pushed me in my chair, Dixie splashed around in the river and then we had a picnic. We then came home and finished building our rabbit run for the three boys and then ended up spending the rest of the day in our room because in the breif 1 hour of us being amongst her parents they had stressed us out so much that we literally couldnt hack it any more. Dont get me wrong her parents are amazing just like many, but they need to stop treating us like a child. Unfortunatly we are still on the lowest banding for the council housing list so unless we are really lucky it doesnt look like we are going to be getting a place of our own any time soon. Living independently is going to push our money to the very max, but life would be happier, we could be ourselves and we can do what ever we like in our time and on our terms. Fingers crossed it happens soon. In other news, I have knitted another 4 hats today which gives me a grand total of 16. Just another 14 to go and my first NICU box is ready to be sent. Please keep donating for me. The support is very much needed. Asthma needs to have better treatments. Asthma needs a cure. https://www.justgiving.com/Charlie-Hockaday-Williams TTFN XXXX

Justgiving

In a few previous posts i have told you about a challenge i have set myself.

Because i have become a lot worse both muscles wise and lung wise i am pretty much stuck in bed unless its for an appointment and then im stuck in wheelchair.

So instead of sitting here feeling more sorry for myself i decided to set my set a challenge of knitting 4950 baby hats. 30 for every NICU unit throughout England.

I have so far knitted 12. 4 today alone.

Although they are hats for NICU units I have decided I want to raise money for a charity very close to my heart. Thisll be my second time raising money for them...

ASTHMA UK

Are my choose charity.

Your support will do me wonders. I have set up a just giving page so please please please support me by donating and sharing my page amongst your friends.

You could save my life by finding research to give me a better medication. You could chanhe my life around!!

Here is my page, keep sharing and please donate. It only has to be a small amount

Your page: http://www.justgiving.com/Charlie-Hockaday-Williams

TTFN

XXXX

Just A Few Hours Of Normality

Some may say that 2 and a bit hours out the house for some "normality" is pathetic, but for me, it took every last inch of breath and energy.

I saw a banner a few weeks ago for a festival in Lostwethial called Lostfest so i decided that myself and my partner deserved a break from the house and we went a long.

Granted it wasnt as good as we hoped it would be but the rain stayed away and at the end of it we saw something other than the four walls of our bedroom.

On the way back we stopped by a huge discount store called trago and we picked ip another 4 balls of wool. I then completed 2 more baby hats and a templete for some scratch mittens.

Of course just doing this few hours of stuff exhausted ne beyond beleif and i used a whole inhaler whilst out and about. Both my lungs and muscles really struggled to cope. As a result i then slept for 4 hours this afternoon trying to recover.

Dont get me wrong, i love the fact i have got out the house eventually just to mosey around, but im still cheesed off for what it done to my body as a result.

I cant wait to start feeling "human" again. What ever that is. As i can no longer remember!

TTFN

XXXX

Typical Day

For me the weekend doesnt really change from any other day of the week. Other than the shops being busy and you see more people walking about the village, its all just another day for me.

I decided last night that it was time for my hair to have a change again. I jeeded a fresh look. Make myself feel good.

So, me being me the minute i woke, i done my usual routine and then we headed off to asda to buy dye.

Although me hair is blonde, i decided i wanted it blonder so we go a bright bleacg blonde. I also wanted to add some colour too so we got a bright pink too. My partner got black. Talk about complete opposites lol.

Once all my hair was dyed blonde, my partner cut it for me, re done my shaven patch and upon my request i got her to put two zig zag lines across my shaven patch. When the pink was ready to b applied, we done my usual fringe bit and also the zig zags. With having pre lightened my hair it now looks friggin amazing. Nice an bright and colourful. Although my partner used the same pink, because she dyed her hair black initially, hers turned out a plum colour which for her looks stunning.

Just doing this though completly exhausted me so i had to go back to bed...three hours later im awake not realising how exhausted i must of been. I do get annoyed by this. For the average person, they would dye and cut their hair after a 6 hour day at work or something very similar and not be anywhere near as tired as me. I do wish some days that my life wasnt like this.

When i eventually woke up properly, i was extremly itchy, so i put on my glasses and i could see why. I was having yet another full blown reaction. I was as red as a beetroot and my lips were double to size. Eventually after 6 antihistames, things started to return to their usual self, and no epi pen was needed but i think if these antihistamines hadnt of kicked in, i would have been stabbing myself in the leg again!!

Ive also managed to knit another 2 hats today so i now have 5 in total ready to send to my first NICU unit. Only another 25 to go and thre gift box will be off to the post!!

Untill next time...

TTFN

XXXX

Goals And Challenges

After my shit news yesterday about potentially not being able to have children, I decided to set my self a challenge. Whilst I was in hospital last week, a very good friend of mind suggested I start knitting, it doesnt take much muscle mass to do and certainly doesnt take and lung power, so off I pop to youtube and have so far self taught myself how to make baby hats. I have currently made 2 for mine and my partners future children, I am hust waiting for more wool to arrive in the mail and ill be making my sisters baby a hat and ive also currently made two others of different sizes. These extra two hats are going towards my challenge. My challenge being that im going to make 30 baby hats for every NICU unit in England to which there are 165. So that roughly 4950 little baby hats I have set my self to knit. This for me would be an ace goal to achieve, not only because its keeping me busy but also, I cant do things like donate blood or stem cells any more because of my deterioration in gealrh so doing this will make me feel mentally great about being able to help both the tiny little babies who are poorly and also their families because not many clothes fit such small children. On average at the moment im making one hat a day as it does cause me cramps so I fear it could take me a little while to achieve my challenge, but im sure I will feel fantastic when not only the first box is done but also the 165th box just like I felt great after I made the first hat. I will keep you all up to date with my progress of course. In other news today Ive not been to great. I went down stairs briefly today as we purchased Dixie a paddling pool because she loves water, but that small amount for "doing somethinf" totally exhausted me and ive been asleep all afternoon as a result. In good news though, myself and my partner have been in contact the the local registry office in Bodmin about booking our wedding. They are just sorting a few things put and will be getting back to us. Marriage for us is super important as it means that legalky when we have children, because we are married we are both legally allowed on the birth certificate so both play an equal, fair and legal role withing any future childs life. So, theres a lot to keep you posted with...untill next time... TTFN XXXX