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

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

What If?!

Ever wondered what if...

I do every day!!

What if my lungs were healthy?!

What if my muscles didnt choose to want a progressive disease?!

What if my immune system was normal?!

What if my parents never got a divorse?!

What if my house never caught fire when i was 16?!

What if i managed to get to my uni placement and became a paramedic?!

What if i hadnt met my future wife?!

What if, what if what if?!

The list is endless!!

My latest what if, what if we dont get a home by October 4th!?

Im so blinking scared about everything and this isnt just because we will potentially be homeless but its because a lot of my life so far has ended up going in the wrong direction, it hasnt gone as ive planned!!

So, like before, have you ever though what if!?

TTFN

XXXX

Becoming Aware

Today I received my indepth letter from the Birmingham psychologist after my appointment with her on the 5th of February. To an outside person or sombody medical like my local consultant or my potential new local psychologist this is one fantastic letter, but for me, it just hits home for how "poorly" my mind actually is. She startes that I have moderatly high post traumatic stress which is both on intrusions and avoidance and my scoring on one of the tests I had to do on the day was 59. Aparently the cut off period for the score is 33 so mine is pretty bad concidering. I still find it hard to know that there is something wrong and that if I hadnt of left it so long and tried fighting it myself then it potentially wouldnt have got tjis baf. I guess we learn from our mistakes hey!! I have tried doing some of the techniques that the psychologist taught me to do. Ive currently now drawn three pictures which are the nightmares Im getting made humorous. Ive also been doing a meditation technique called leaves on a stream. Ive had to hold back a little though because it has been getting really intense and really scaring me, making me want to cry all the time. It is also making me feel even more vunerable, and im trying my best to not let the other half see this. I dont want her to worry. I will of course let her read the three page letter if she likes, but if she wants to talk about it, itll have to ve later when her parents arnt around as I dont want them getting involved in my life. Yes they are technically now my family, but not directly, and I dont want everyone knowing my business. I am very much a private person and physically talking to people is hard. I never like the responses I get, they are either sad, cry worthy of negetive or on the other had, they are those annoying positive results which yes in reality would be good, but unless your living that particular life you will never know how hard it actually is!! Admittedly it is all starting to hit home and I am ready to break down but I dont want to make everyo.e else sad. Maybe I should start think about myself once in a while...if only it was that easy hey. Well I think that was a complete and utter bit of randomness and I bet half if it doesnt make sense...well welcome to my head ha. TTFN XXXX

I Forgot To Mention!!

So ive been thinking again tonight and this time its about my hip.

As you all know I went back to see the third consultant two weeks ago to find out about my hip. Whilst in clinic he said he would do injections under xray guidance to try and treat my condition.

I got my clinic letter yesterday and in it, it explains that these injection wont actually be treating it at all, its being done to try and manage my pain.

Now, my thoughts are, do I bother going through the agonising pain of havibg a huge needle being stabbed into my hip ball and socket joint to have more pain when the drug gets squirted into it, or do I just continue with my paracetamol, codein, tramadol and oramorph!?

Im stuck, he admits in the letter I am going to be very difficult to trwat vecause of my lungs.

I dont know what to do!!

TTFN

XXXX