Stolen From A friend For Invisable Illness Week

Admittedly this has been stolen but of course with my answers. It truly shows that to be poorly, disabled or struggling it doesnt have to be usually seen... 1. The illness I live with is: Asthma - to define it a little more, Brittle asthma. This is very similar to asthma but its more severe. I have regular attacks, rediculous amount of medications and frequent trips to hoapital. 2. I was diagnosed with it in the year: 1991. I was 3 months old 3. But I had symptoms since: a few days old that then gradually got worse and worse 4. The biggest adjustment I’ve had to make is: realising that I cant do the things I use to and I shouldnt be embarrassed if I need to take my meds in public. 5. Most people assume: "That it's just Asthma" - I cant breathe and I have a few puffs of the blue and im sorted. They dont see the devestation of watching your friends die or needing people to actually look after u because your lung function is below half of what it should be. 6. The hardest part about mornings are: waking up and it taking 2 hours to get ready. Know not just getting washed and dressed. But also eating, taking tablets and doing and hours worth of.nebulisers before I can move. 7. My favorite medical TV show is: Casualty and Holby city 8. A gadget I couldn’t live without is: I want to be greedy.as I have three...my camera, photography is my passion...my mobile, it literally never leaves my side.and my kindle, not being able to.read, play games and.browse thee net whilst doing my meds is a nightmare. 9. The hardest part about nights are: not actually sleeping. Being led there with ur girlfriend to ur right and ur puppy to ur left taking it in turns to snore and u literally just cant sleep. 10. Each day I take : far to much to write here but.4 different types.of nebulisers, a draw full of tablets and a bit more 11. Regarding alternative treatments I: personally I would never stop my current treatments to try thwm. There is no guaranty that they would work and im.not about to risk my life over it. 12. If I had to choose between an invisible illness or visible I would choose: visible, no questioning that. Id get more respect for a dibilitating illness. 13. Regarding working and career: I use to.work.in.bristol childrens hospital and my dream was to become a.paramedic...asthma.stole.that from.me. 14. People would be surprised to know: that not every pwrson with the same illness ends up in the same situation of poorly co trolled health. Not everyone takes the exact.same.meds.and not everyone.has to be exactly how the medical textbooks say its meant to be. 15. The hardest thing to accept about my illness is: im not the.person I use to be. I cant do what I use to. I cant eat what I use to. Adaptions have to.be made 16. Something I never thought I could do with my illness that I did was: find someone to love who loves me for who I am and who doesnt allow my health needs to get in the way between us. 17. The commercials/adverts about my illness: sadly there arnt any. Adverts cost to.much mo.ey for awarness.to be raised. Its all down to AUK and sufferers. 18. Something I really miss doing since I was diagnosed is: being active. I was the sportiest person I know and I cant even walk up a.flight of.stairs anymore. 19. It was really hard to have to give up; Dairy , if I.eat any form.I get super poorly...though sometimes I just cant resiat it. 20. A new hobby I have taken up since my diagnosis is: knitting 21. If I could have one day of feeling normal again I would:go on holiday abroad. Be able to pass a.fit to fly test and go on the holiday to florida that I had to miss this year with my.best friend 22. My illness has taught me: To stay positive. Never let a day pass with out telling the ones u love that u love them. Treat every day as if it was ur last and enjoy yourself. 23. Want to know a secret? My other half has no link to my blog at all, she never reads anything on.here as this is a.space for.me to.rant about life without it having to upset her. 24. But I love it when people: share things with voth myself and my.other half. We are a.team and stick together. 25. My favorite motto, scripture, quote that gets me through tough times is: live life, love laughter. Keep smilling. Never regret. 26. When someone is diagnosed I’d like to tell them:this isnt a.life sentence, u control ir asthma, not ur asthma control u. 27. Something that has surprised me about living with an illness is: the lack of empathy from people who know nothing.about ur daily living with this disease. 28. The nicest thing someone did for me when I wasn’t feeling well was: send my girlfriend up to me.as a.suprise visit when I was on.a.breathing machine 200 miles.away from her. 29. I’m involved with Invisible Illness Awarness week because: people need to be made aware. An understanding needs to.be given and taught. 30. The fact that you read this list makes me feel: like im.teaching people. Giving an insight into my life. Proving there is life after a diagnosis and that there are many people out there.suffering with a disease that cannot be seen 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

Enjoying Life

What a busy (for me) weekend it has been. Thankfully, yesterday morning my new bank card had arrived which meant I could then have access to money. Just aswell as we had been invited out. Myself and my partner got invited for a meal at the toby carvery in exeter with two of our friends who have a little girl together. These two friends have been our rock. They are also a same sex couple, and the one use to be a support teacher at my senior school, so I personally have known them for a long time now. They also had a little girl through AI treatment just over a year ago, and they are also supporting and helping us massively with our journey. Having such amaxingly close friends really does help, and allows you to have a great social life. Weve arranged to meet up again in May when they come back down to Cornwall for their holiday. We also took our little pup out for a walk around the field before had also, shes mental when it comes to walks, she just doesnt want to stop. Because of me though, we are limited to how long we can stay out. Sadly today I have been in absolute agony and if im honest, with the weather being ultimatly crap and being in so much pain I just wanted to stay in bed all day. But yhen where would that get me... ...so instead we went to the beach. This was Dixies first time and she friggin loved it. Both me and my other half were so happy that she loved that sand, seaweed and water as much as we had hoped she would. By the end of it though, she was soaking and really cold, so we wrapped her up in her blanket and snuggled her in her bed that he put in the back of the car for a nicer journey for her. Right now my life couldnt be any better. I have the most amaxing partner that I really love. And our little pets keep us busy and on the go. The future really is heading our way and I cant wait to see how it pans out. As usual though, your all going to know in good time hehe. Here is a picture of Dixie loving the beach and loving the camera, right little poser she is!! TTFN XXXX

Chirpy, Smiling and Goodness atlast!!

Well, im not going to say everything as im not about to give the whole thing away, just incase it gets out to the wrong people as its all a big secret to EVERONE ha. So...this news thats made my day is that myself and my partner have found a sperm donor, and we are meeting up with them in a few weeks time. Weve been chatting to each other on this special website that links both sides and parties together and last week we exchanged emails and been happily chatting through there also. He seems like a very nice gentleman, and has said that he will sign a contract when we meet to say he signs over all his legal right to myself and my partner which we are also over the moon with. Not only all of the above, but he has said he doesnt want any moey, just travel expenses if he has to come to us at all, but at present, we will be visiting his end of town so no money is needed to go his way. Considering IUI or IVF in a clinic was meant to be around £3000 this is a lot cheaper and aot more comforting being able to do the deed in the comfort of our own home and not in a sterile clinic with every man and his dog exploring your vegetable patch. Fingers crossed, this time next year, myself and my partner will be mummies, and our family will start expanding. Excitment does explain it enough. TTFN XXXX

Photography!!

Its that time again to bug you all. Im trying to get my photography known to many people, but its a slow progress at the moment. Some photos ive not put on my facebook page as they are of babies, and although the photos are stunning, I dont trust the world enough to not have them nicked or used inappropriately. But I still have a huge amount of other stunning photos on my page. All of which can be made into cards and postcards at a small price. This is all in place to help me build up my equipment and get my little business set up official. First I need your support. My facebook page is: https://www.facebook.com/CharlieWarliePhotography?ref=hl Please take a look, like my page and share it amongst your friend. TTFN XXXX

Money, Money, Money

Everything lately involves money. Earlier this month, we found out that we have infact been paid £200 less each month from the job centre than what we thought as they failed to inform us. We had been wondering why each month we seemed to be dipping into my DLA payout from last February. And now we know why. The pain in the ass thing about this is that not only has christmas just passed, but it was also my birthday, plus valentines day, plus a years anniversary from me and my partner having been engaged. We also had to change over my car insurance which cost extra for the initial payment, plus we had double pet insurance for it being the initial payment, then Dixie became poorly and we had to rush her to the vets, and we also had to go to Birmingham twice for my appointments. Ontop of all this, because I am struggling each month, im cancelling my storage unit and selling everything thats in it. Last year to drop my unit it cost £25, now they want to take £120. I told them the reason im cancelling my storage is because I dont have the mo thly £53 let alone the amount they want today. They werent impressed so have given me till the 7th March to pay it off. It is literally all about money. Everyone wants it when we dont have it. Thankfully I have been a little OCD with saving because me and my partner desperately want a baby, so now we have needed to start dipping into this. Were not best pleased, but what else can we do!? The government dont want to help us, and the bills need to be paid. More stress to add to what we have. TTFN XXXX

Money Worries!!

I havnt a clue how Im going to get over this, bit I hate it.

Im not short of money as I save a crazy amount each month but each month I panic a ridiculus amount that Im going to run out of money or that Im not going to have enough to pay for all my bills.

We have a little book started this month where we are writing down any extra spendings that we are doing so we can monitor how much money we have left for us to spend on what we like.

Some people may think that doing that is stupid but with me being able to visually see the out goings it some how makes me feel better.

Im so pathetic about it, everytime we are out and I see a cash point I have to check my balance. This will still be done even if I know exactly how much is in there.

I want to get this stressful situation out of my head but I really dont know how Im going to do it...if you can think of any, comments would be greatfully welcome as it really is getting me down.

Anyhow, puppy is awake now so Im off

TTFN

XXXX

Frustration!!

Saturday was an amazing day. Me and the other half decided to invest in a puppy. Dixie is absolutly amazing, I couldnt have asked for anything else.

I have been a little naughty on the night times though. Because of my crappy lungs I dont sleep all that well so when Dixie is awake and winging a little bit, Ive decided for the past two nights to pick her up and cuddle her...yes,I know HUGE bad idea. I hope she wont pick up on it again tonight...or rather I dont give in as easily haha.

Well,the point of this post is because the other halfa mum is massively pissing me off and I have no idea what to do about it.

She also got a puppy on Saturday and wont get off the fucking internet reading about how best to train your new puppy. Shes then telling us all about it and then telling us that we shouldbt do this and we shouldnt do that...because the internet says so. Weve told her we dont care what the internet says, we are our own individual people and we want to teach and train our little girl as we want.

Also, we woke up at 9 today and the other halfs mum had ago at us...because Dixie was meant to be fed at 0730. If she was hungry she would have been awake and moaning, but she wasnt so if we wanna sleep we will!!

Other things are, shes getting nasty if our puppy wees on the floor by accident but then hers does it.

Shell also say that we shouldnt be cuddling Dixie as often as we are as she will become to dependant on us.

There is a whole lot more but I think if I tell you it all I may scare you away.

I want to live my life with my girlfriend and our pets and eventually our children.

To be honest im scared also. If shes treating us like this about a puppy, what the bleeding heck is she gunna do when we have our baby, is she gunna dictate and tell us were doing things wrong...I hope not!!

TTFN

XXXX

My Thoughts For The Day!!

Ive been sat here all day as my lungs have been really rubbish abd my new GP seems to be the worlds biggest waste of space and basically told me if I get worse go to the hospital, dont think he realises I would like to be home this christmas...

So with being sat here, my mind has been giving me every worrying thought possible again (yes of course this has been increase by my yet another increase of steroids). My thoughts at the moment are going back to the lump I had in my mouth and my recent biopsy. I get my results on the 6th January so yes I dont havt long to wait, but its still long enough to have everything do through your head.

I keep thinking the worse. Do I have cancer!? What treatment will I need!? Was it just a random growth that wont need any treatment at all!? These are just the three main things im thinking of.

I just wish the 6th January could come around quicker. Would do me the world of good!!

TTFN

XXXX

What To Do!?

Life sure does like to throw you challenges doesnt it!? Well, I seem to think so anyway!!

Last year my best friend asked if I wanted to go to florida with her, great yeah I thought, why not!? And then I thought hmm I need insurance and what a joke that was. As it was far to much I figured I may aswell just start saving money every month for something else as florida really wasnt going to be affordable.

February this yeah my amazing girlfriend had pruposed to me, so the saving naturally went towards that. We have worked out that roughly it will cost £3000 roughly. Bummer, thats going to be a few years down the road then.

So the next scenario was lets start saving for a baby. Being in a same sex relationship, unfairly its going to cost a few thousand pound just to be able to create a famile. Totally unfair right. Yes I thought so also.

Then I thought, can we both be on our childs birth certificate!? So the research began and the outcome is: if we went through a fertility clinic then we dont have to be married and we can both be on the certificate. But if we went for a cheaper option of finding a donor and doing it in the comfort of our own home then no we cant both be on the birth certificate unless we are legally together. So yet another blow.

Now we are deciding, do we go through a clinic and put the wedding off and start our family OR do we get married and then do the cheaper option of starting a family!?

Im really stuck. Sometimes I think that we are both too young to be having children with me being nearly 23 and the other half having just turned 20, but then you look in society and see that half the younger population have started having children.

Our other sticky situation is that we cant afford to live in our own home so we are currently living with the rent in laws. Yes they have a spare room which a few months ago they happily said they would let us have for a baby, BUT pops uses that room on the odd occasion to sleep in when he cant get comfy in his marital room. So I feel bad that ill be taking his only other place away from him.

All these thought are actually stressing me out a little. I also feel alightly pressured as tine is ticking and I kind of want my last nan to be with us when I get married and also start a family.

Time will tell I guess!!

TTFN

XXXX

Here, There and Everywhere!!

Life has been a little hectic over the past few weeks with having different hospital appointments and travelling up and down the country. Hospital appointments have consisted of going to Plymouth hospital to have over an hours worth of lung function tests so that they can get a good idea of how my lungs dont work, and then I am seeing the new Consultant in January at some point so that should be interesting. I have also have a fracture clinic appointment following my fall a few weeks ago and breaking my wrist. The consultant there isnt to happy with my xray results so has requested that I have a CT scan which is in just over a weeks time. so thats slightly annoying that this has happened. I have also had my second appointment with the other hip doctor who was a little bit annoying actually as he didnt really have a clue and is referring me to yet another doctor and has suggested that I have the steroid injections again in my hip (which didnt work the first time) and then if that doesnt work they will then look at what else can be done before the route of a hip replacement. I have also been back up to see mum recently as it was her birthday and well, it was slightly awkward to say the least and I came away a little upset. firstly, she opened the present that we gave her whilst I was in the toilet and then just put it on the side and didnt even say thanks, where as with my sisters she opened it all whilst everyone was there and said a massive thank you. secondly, she didnt even really speak to my other half which is really starting to hack me off as it has been well over a year now and she still cant seem to come to terms with things and accept who I am engaged to. Thirdly, I have found out that my sister has been going around mums and having little drinking sessions with her and that they have been going out shopping and generally having a good time, Im gutted with this as me and mum never really done anything like this and now that I have moved away she seems to be getting on really well with my sister. And finally, my mum in front of everyone asked my sister if she wanted to come around for christmas day and completely ignored me, so as a result I have decided that Im not going to see any of my family at christmas because I dont feel like they want me to see them, I no longer feel accepted by them and that they want me to be in their lives let alone my partner as well. On happy notes, myself and my partner have officially been together for just over a year now and it is exciting. We decided to treat ourselves, and spend two nights away in Newquay. Whilst away we went to the cinema and seen Gravity which is a pretty amazing film, we also went to the seal sanctuary which although was cold, was really amazing to see all the different seals and also the poorly ones in the hospital who are being really well looked after. We also went and had a MASSIVE chinese which was lush, but we ate far to much. My other half also introduced me to the hunger games which is a great film, very well put together!! so we had a busy couple of days, just us enjoying each others company. My other half also had her 20th birthday which was great. She was ultimatly spoiled by both her parents and myself with lots of different gifts to keep her busy some of which included pyrography (which shes done one already and it looks amazing, ive never seen it before and I really like how its turned out!!) and she also got an air brushing machine to be able to decorate her cakes with. We also went out for a meal, both of us and her parents which was great as weve never actually done that before so it was a nice treat for us all. On sad news though, Ive had yet another assessment with the community physio team and they have now decided that Im going to have to have a wheelchair when out in the community as my muscles have gotten far to weak and im having to many falls which is compromising my safety. I am a little gutted by this but I guess it had to come at some point hey. My photography is coming along great, I recently entered a photo into a competition and im awaiting the results so ill let you all know when that happens. These photos were taken with the help of my lovely lady dressing up in a stunning dress and having some nice make up on. One of our friends have also asked me to take photos of her and her baby in a few weeks time also so although im a little nervous about it, im also excited as itll be my first official shoot with people and not of still life. So, thats my life for now. TTFN XXXX

The Here And The Now!!

Recently things have been a little scatty and Im not all that sure what to make of it. I keep going through phases where I am really down but trying really hard not to tell the other half as I dont want to worry her, but sadly instead I seem to be snapping at here and getting frustrated at the little things that I used to fine with. I tried telling her that these little things have started to annoy me but she seemed to have laughed it off as if I was joking so now im not all that sure about what to do. Im hoping that its just because Ive had a pretty rough few weeks with my lungs and its just washing me out. Who knows!! With regards to my lungs, I went to the doctors last week because I have started really struggling asthma and infection wise. I have been put onto some basic antibiotics for now to see if it would help but sadly it hasnt done a huge amount. My peak flow is still super lower and my oxygen levels keep dipping to around 92%. Sophie wants me to go to hospital but I really dont think I need to go yet. I am off to the doctors again later today but I dont actually think there is a lot more they can do, but I guess ive ssen someone and thats all I can do. Financially things have been a little tough for both sophie and I which has really got us worried. we have had our money drop by just under £200 a month which has meant that we have a very small amount of money each month to help us get by. Were really not sure what we are going to do. We have now applied for careers for sophie as we have calculated that she spends around 40 hours or more a week looking after me, and she does a brilliant job at it and I wouldnt be able to survive without her help. I am also having appointments with the doctors because it has come to the stage were I feel I need a little more support mobility wise. I am falling over a lot more, my legs are giving way on me and I cant physically keep hold of my crutches because my muscles keep giving way. Ive not had a verdict as of yet but im sure I will let you know. On a positive note, I have lost 2 stone in weight since I have had my surgery so I am super happy, ok yes it has been because I cant physically eat all that much, but Im still surviving, so Im clearly getting enough food going into my body. Im also moving onto more solid foods which im also super happy with as I have missed eating "normal" food. Sophie and I are also still wedding planning, it was come up to around £3009 altogether to pay for the whole wedding so we now need to start saving and buying things slowly to achieve the best day of our lives. We have also attended our first wedding fair, sadly it was rather erm CRAP so we wont be attending one there again, but it gave us a good insight into what we could do and what is on the market at the moment. Well I think I have rambled enough now so I will leave you to it!! TTFN XXXX

Struggling

With another admission luming to hospital I cant help but keep getting flash backs from my last admission and previous admissions.

Ok this time there is a difference as its not an emergency and its not an asthma attack. Im going in for surgery.

Im struggling to sleep again because it seems that everytime I close my eyes im reliving the terrible times ive had and its scaring the poop out of me.

I dont know what to do, the relationship with my mum has changed because she has a new man in her life so I dont feel I can talk to her and my other half is back in her home town so I dont want to worry her when there is over 100 miles between us.

Shall I mention things to one of my link nurses when in Birmingham to see whether they can help at all or do anything or am I just being daft.

Whats also not helping is being on this silly diet and only getting about 1000 calories a day. I have no energy and just feel drained. Surely this also inst good for surgery.

Well theres my worries for now!!

Ill keep you posted for how I get on

TTFN

XXXX

I Just Dont Get It!!

As you all know I have had my lovely other half with me now for a few weeks and last week it was time for me to spend some time down at her home with her family.

Last Wednesday we were out in town when I had a voicemail from my nan blaiming me for the fact my mum had been rushed to hospital having chest pain and that I had to get back from Cornwall and go and sort her out.

I rang my sister to find out what was going on as I hadnt heard anything other than this voicemail to be called a self bitch for ignoring mums texts and not caring for anyone else other than myself.

It turns out that mum had sent these text to my email accoubt which I obviously wouldnt have got in the middle of town.

This all obviously upset me as I was being blamed for something I hadnt caused. And what if I didnt live with mum. What if I did actually live with the other half in Cornwall. Would it still have been my fault and would I still have been called a selfish bitch!?

I was willing to let all this past as I cant deal with the stress, but for the last week my sister wont speak to my and neither will my nan, to the point that no one is ringing the house phone just to avoid contact. My mum has also been very secretive and going upstairs and shutting doors when on the phone so I cant hear what shes saying and also has only spoke to me when she wants something.

Not exactly fair right!?

I dont know what to do, am I really a self bitch!? Did I really cause this chest pain?! Am I ever going to be able to move out and not get called every name under the sun.

All I want is an apology from my nan and sister for blaming me for ignoring mum and causing her chest pain when one its mums fault I didnt get and text and 2 I cant physically cause chest pain from 100 miles away and having not spoke to her.

Its driving me mental. Do they not realise what this is doing to me!?

TTFN

XXXX

Sleepy Issues

For those of you who have read my most recent blog you would know that I had a recent admission to ITU with my asthma where I ended up on a special breathing machine but also keeping me awake. This was because I refused full ventilation.

Well, since then (like previous times) I have been having real bad issues with sleeping. Every time I close my eyes it takes me back to that very moment and Im worrying myself with what ifs!? Truth be known Im scared of death and Im scared that one day my asthma will be what kills me and at the wrong time.

All of this is worrying me and Im finding it hard to talk about. My girlfriend asked me last night what was on my mind and what was it that was keeping me awake and I was to scared to tell her. So I said nothing was up. I hate not telling her. I just feel that we cant relate in this department as shes never had to experience it. In the mean time though not only am I getting rubbish nights sleep like normal but I now have this added extra.

Im stuck.

Im lost.

Im confused.

I dont know what to do for the best.

Help!!

TTFN

XXXX