Fear

Unfortunatly things still havnt improved the way nyself and my CPN would have liked. I have had HTT (Home Treatment Team) visiting me at home every other day to also try and get me extra support through this difficult period of my life again. I just cant seem to get my head around everything that is going on, i cant seen to accept the deterioration nor the fact i am never going to be the same again. My bigget fear is being readmitted to a secure mental health unit but equally i knot that there becomes a stage where i have no say in whether i stay at home or get admitted. Everyday that HTT came to visit they kept hinting towards an admission and as of late so has my CPN. They have both bow decided to do a joint visit this Thursday as they have been discussing me and now what to tell me their plans. I cant help the way i feel. I cant help being depressed. I cant help feeling dissconnecred from my body. This isnt the way i wanted my life to be, its how my life choose to be and unfortunatly its not something that i myself is going to change on my own. The last two weeks have literally mimiced to how i was in January and February time and that ultimately led me to the admission in the first place so i guess you can understand why im worried. I could lie, say everything is better. I have no suicidal ideation at all anymore but then i would be left with no support. No one would trust me with what i said in the future and then equally i could be making things worse for myself. Mental health is more confusing than my physical health. We shall see by Friday hey!! TTFN XXXX

slowly Returning

So, after many many many months of not blogging, i am back. Not really sure what my latest blog was or what you all know but in short, in January this year i had a severe asthma attack that woke me up early in the morning. Got blue lighted to resus where i aparently had the ITU consultant bagging me untill they could get the COAL machine down from the unit. After spending a few days there, i went to the respiratory ward to need the crash team coming to my bed side as i rapidly deteriorated again. A few days after this my body decided enough was enough it needed to rest and recover so went unconcious for just under 24 hours. Horribly i woke up with breathing tubes down my throat and bang my severe complex ptsd is nade 10000000 times worse. On the 11th february (my birthday) i got moved to a secure mental health unit when i was put on observations for 2 months because my self harming had increased and i wanted to commit suicide. My lungs were and still are deteriorating rapidly. My lung function is now only 35%. My proximal myopathy has left me wheelchair bound and unable to stand. As i said previously my ptsd has gone wild and i am now being tested to see if i have a neuromuscular disease like MS. After 7 months in hospital i came home on the 4th july. I am having community support teams visitng once sometimes twice a weeks to give me help and i also have my wife looking after me full time. I am doing ok, trying to find things to do thats adapted to a life in a wheelchair and im trying to make new friends. I will try my best to keep blogging, but for now, please keep me in your prayers that things will get better. TTFN XXXX

The Joys Of An Asthmatics Life

Ventolin, salbutamol, puffer, inhaler, reliever. Recognise these words!? Im sure you have!! These are just what asthmatics use because they get out of breath right!? Overweight and dont exercise so use their "puffer" and carry on as if life never stopped. WAIT!!!!!!!!!!!!!!!!!!!!! Blinking heck well I have a shock for you. If you think that this is asthma defined you need to spend a day in my shoes, actually scrap that, ill give you the morning or the afternoon, you pick as you wouldnt cope a day. Asthma is not a few puffs of the blue and carry on where you left off. My life has been destroyed by asthma. My asthma is very different and suprisingly not many people have it which is why its not as well known. I have severe brittle asthma. I could be sat watching telly and then within a split second my lungs could decide that actually they didnt like that cold air that ive now started breathing in because of the winter months. Within that split second my oxygen levels will plummet, my co2 levels will rise to dangerous levels, I will become exhausted, tired, confused, SCARED. My life is hanging in the balance once again. I need drugs wuick. Quicker than quick infact. I need an ambulance, shit wheres the phone, shit I cant talk. Phew my girlfriend has walked into the room, 999 "ambulance"...amazing paramedics come within minutes because ive an emergency flag on my address alerting them of my asthma. They put a needle in my veins, they push drugs into my blood stream, they put and oxygen mask on my face with more nebulisers. The get me into the back of the ambulance, hook me up to all the monitors, the pre call the emergency room, blue lights go on, sirens blaring, 90mph down the dual carriageway, arrive in resus, consultant;nurses;junior doctors;itu team all waiting form my arrive, fuck where they taking my girlfriend please dont leave me on my own, doctors listen to my chest, its silent and no air is shifting, the stab a needle into the artery in my wrist to draw special blood, they test the blood and get instant result, results arnt good, more iv drugs being pumped into my system, muscles working harder than they should, doctors start getting really concerened, I move from resus to intensive care, they stab my artery again with a more perminant lline, they attatch a tighter fitting mask to my face, I remain like this for hours, finally drugs start kicking in, it becomes easier to breathe, my life is coming back to me. Ive survived another. Attack!! I guess me going through a breif outline of my life is like trying explain to a man the real pain women go through with Labour and sadly they will never know for real. For you, there is a very similar way to know how I feel, tape up ur nose so u cant breathe through it, put a normal average size drinking straw between your lips, now tape up the rest of your mouth so no air can get in other than through that straw. Struggling yet!? No, ok, now go and run for 20 minutes flat. You wish. You wouldnt make it 2 minutes!! Thats how I feel daily and when an attack shows its ugly face this struggling and fighting for breath feel intensifies. Ontop of this, I take many medications. These have side effects. I need to devide, do I want these side effects ir do I want to breathe!? Im not an idiot, I choose to breathe. Unfortunatly though this brings me to todays appoinyment with the doctor. One of the side effects from my medications is a muscle wasting disease. Ive now been told that theyve looked into my case. Theyve assessed everything. Theyve looked at alternative drugs. THERES NOTHING THEY CAN DO. My muscle disease I am told today will get worse. The only way it can remotely get better is by coming off the medications, but like I say, I dont and I cant breathe without these drugs. Currently its getting to the stage im struggling even more to hold my head up. Ive been given exercises to try and strengthen my neck muscles but im told not to do them too iften as I can rip them and then they are permanently damaged beyond repair. Inevitably I will end up like a newborn, I will not be able to hold my head up. So, back to my earlier question, do you want to spend a day in my shoes!? TTFN XXXX

Its Official

We had the council man come around at 10am as planned today to check over out current home...during this meeting my partners parents had to decide on whether they wanted to take the bungalow they had been offered. Up untill the moment the council man her parents were still not convinced they wanted to move...and then once he left, they came up and told us they are moving into the bungalow. This now means that myself and my partner have to be out of our current home with in 4 weeks.

We r then officially homless.

Were going to start packing because either way we have to go.

Ive so many emotions right now. Im also scared for my health.

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

Life Recent Events

Thankfully life is doing fantastically at my other halfs in Cornwall and her family are fantastic, they are so supportive and just want to help me with everything. Im not used to all this care and help.

Ive had an appointment at my old local hospital and shes pleased with how things are going, and she said she will contact Plymouth hospital to see if they will take on my care as she knows the consultant there and aparently he manages difficult asthma also. Though this doesnt mean that Im going to stop going to Birmingham as they have been amazing.

Talking of Birmingham, I have also been to see them. Physio saw me first and done a few tests on me and confirmed that I dont have dyafunctional breathing nor do I have hyperventilation syndrome so I am absolutly over the moon with that. She also taught me a few more gunk moving chest physio moves which is super helpful. She also said that if this doesnt work by the time she rings me in a few weeks, she will see about getting me a device to help increase my lung function and shift a bit more gunk!!

Dr M is please that I have managed to stay on 10mg of pred, though when I asked if I could reduce it more or come off it altogether he said no, so thats a bit of a downer. He also says that im not allowed to reduce any of my other maintenance meds either. I guess the only good way of looking at this positivly is that I dont need any more meds currently. He wants to see me again in 3 months time to keep a close eye on me.

So life has been full of hospital appointments and driving up and down the country.

Im still waiting for an "urgent" mri scan at the request of my hip consultant to see how advanced my avascular necrosis is...who knows how long thatll be!!

Im travelling back to Cornwall tomorrow as I have an appointment at my new GP surgery to fill them in about me.

I am so shatterdd though, I tried driving today after going to Birmingham today and my legs just didnt want to work, theu were shaking all over the place, I really do hate the way things have ended up!!

Well thats my bit of excitement for the last week!!

TTFN

XXXX