Challenging times

I hate the fact that i an still struggling with my emotions and how to come with change. Unfortunatley i guess thats just one of those things when you have an emotionally disregulated personality disorder. This is my latest diagnosis. This is my lastest challenge in life. Sadly not only have i still been finding it difficult with my latest knock down with my physical health. Hating the fact that my latest end of life didnt work and wishing euthenasia was legal in this country. Finding out that our latest puppy who we rescued has an abnormal heart, an allergy hypersensitivity and asthma of all things and to top it off, finding out that a certain someone has be slagging me off behind my back and also been telling people i am a selfish, vile and attention seeking person, its safe to say its been a bloody tough 2 weeks. Last night when all went wrong again, i had to call home treatment team and get their help as i was in yet another crisis. They were planned for coming out today for a joint visit with my care co/cpn to try and find away to continue to help me through this tough period of my life in the community. I have an opportunity to ring the home treatment team on sunday because i am due to be staying at my mums for the weekend. On Tuesday i have the duty CPN worker ringing me to check in one me as my care co is on holiday for the week. I then have my psychologist on wednesday and then my social worker on friday. I think its safe to say everyone is doing their best in trying to help me and wanting ms to see the light at the end of the tunnel and i literally cant thank them enough as sadly with the way my personality disorder works, i cant process all this deterioration in my physical health which is why for me its easier to ignor it or try and end it. I know its having an impact on my family and thats the worst thing of all as i hate having to ve dependant on people so knowing that i am gaving such an impact on their lives and their health it absolutly breaks me up. It just adds to my torment in my head and adds to the suicidal thoughts. I have tried my best with getting distracted today after i broke down with my cpn and home treatment team again. I swear im going to start bwcoming ocd with cleanig though as ive cleaned the bathroom 3 times today which mega sucks. One bonus from today though is that i have been refered to a specific mental health respite centre to where i will be admitted for up to 2 weeks to try and help me through this crisis period. This will be as close to a hospital admission as possible but without the secureness and 24 hour 1:1 line of sight watching. There will be help there for 24 hours a day but not to the same safety degree. Fingers crossed i can get there soon. Well thats enough for me today as its making me feel shit just typing this. TTFN XXXX

Not Much To Say

At the moment it doesnt look like i can say a lot, literally because it looks like someone is watching what i am saying and being a complete and utter prick and sending stuff to my wife. If you have noticed, i never mention any names as i dont want my family to know about what i write in my blog. They all know i have one. They all know im depressed. The all know im finding it hard to accept the live i have been given with illnesses and disabilities and THEY ALL KNOW IM SUICIDAL!! Thats nothing different to anyone meber or my family so before anyone decides to copy and paste any part of my blog and add shit into it and remove stuff that i have written fucking jog on. I have this blog as a way to release things from my head. I purposly chose to write it in a blog rather than writing it on pen and paper SO THAT MY FRIENDS AND FAMILY CAN NOT READ WHAT I HAVE WROTE SO STOP BEING A GOD DAMN FUCKING PRICK AND STICKING YOUR NOSE WHERE IT DOESNT BELONG. Little did you know but you caused an argument between me and my wife and at the weong time because of the bullshit you had said!! I also dont need any nasty remarks from this blog. A lot and i mean A LOT has happened since the weekend and i an lucky to be here for more than one reason. And at this present moment in time, i dont mean lucky for me. I mean lucky for those around me . I am having top intervention that i can have at home because my mental health has taken a steap decline backwards. Its nothing new to my friends and family and its nothing they themselves with ever be able to change. I have grown to being this way because the deterioration in my physical health and sadly that has taken a very steap decline backwards. Thats no excuse for me trying to end my life nor is it an excuse for anyone else, but this is who i am. The people who do care for me and love me regardsless know this. Its the risk they take when they accept me into their lives or choose to keep me a part of their lives. I dont ask to be within the circle of social activity, they choose to keep me. What you done on Saturday night doesnt change how i feel myself. It does however change the fact i no longer trust anyone on face value!! Cheers for that!! 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

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

Just Another Day

Up nice and early today because I had OT coming to measure me up for the stair lift im having fitted. Thankfully thatll stop me falling on the stairs like I done yet again tonight. After all the measuring I then dropped my lovely girlfriend off at Bernados for her 3 hours of volunteering. Whilst she was there, I filled my time with walking Dixie, sorting our flowers out and chucking the dead ones, eating some diinner, nebbing and sleeping. When I woke I felt like absolute shit and rather puffed. As a result I had a quick (ish) dash to the mirror, noticed my lips were blue, so went and got my sats monitor...90%. Bollocks. Quick nebbing session before I had to get my lovely lady again. Thankfully im feeling a little better this afternoon and evening so ill see how I go before I ram any more steroids down my neck. Weve also found another feild to which we are allowed to walk Dixie and blinking heck she blinking loved being back in a feild again chasing a ball. For a squidgy puppy she aint half blinking adorable. Other random things about my life today...my GP receptionist rang me because my GP wants to see me so the had to arrange and appointnent. Its planned for the 28th. When I asked if she knew what it was with regards to, she thinks he said it was because I need to start a new medication. Im baffled as to what for so it should be interesting. And final news for the day to put a smile on your face...today ive lost another 2lb and a quarter in weight so since 6th January this year I have now lots 1stone and a quater and a grand total since the start of my weight loss last August of 3stone and a quarter. I just have another 2 stone to go and im at my healthy weight. Really hope I can do it. Hope your all well. TTFN XXXX

Why Cant One Day Be Simple!?

With an intentional early rise this morning, who knew that the day could turn out so god damn shit!! First off, we were intending on going swimming, but both my other half and her dad had to go to the doctors. My lady has been refered to someone a little more specialist to help out with a new problem that shes got (I say new, but weve been back and forth to the GP so many times over the last year, but theyve only just decided they cant control things any more). Sadly though, with her pops, I ended up having to drive him to hospital on the GPs orders. Hes had an increase in his shortness of breath over the last two days that his inhaler wasnt sorting and was getting a lot of chest pain. An update on him as of an hour ago after an xray, ecg and blood work, he may have a possible small PE. As a result, he is being kept in overnight just incase. I hope its nothing to bad, but on the other hand, maybe this could be a wake up call for my other halfs parents crappy diets and lack of exercise. But, will update you more on what is going on when we know more. I have to go pick up my mother in law who is currently still at hospital, im just hoping its pretty darn soon as im normally in bed by now. The other shit oart of today is that we had the council man come around today after he refused to put in a stair lift for me two which two medical professions told him I need and boy didnt I have yet another go at him. On a good note though, we are now getting a stair lift. On a bad note, hes only doing this for the mean time because he is basically kicking the four of us out. As aparently there are no homes in cornwall with two large double bedrooms either, me and my other half now need to venture on our own. Weve been told we have to sign up to home choice and start bidfing on properties. The council man also told us that they cant help us out anymore financially (because we told him were struggli.g to live off the parents on our income of benefits), he then also told us that the homes come unfurnished and that he also cant help us there either ( which im pissed about as ive just sold all my storage kit to which held my first flats living stuff. We are well and truly screwed. I went straight upstairs and just cried. We cant afford to live on our own, and the chance of me now getting a home that is suitable for my needs is zero to none. The council man ill just add said that if my other halfs parents got a house first, we would have to leave at the same time whether we had a home or not. So this twat is willing to make an ill and disabled person homeless. What the heck is the world come to. More stress to add to my life. I just want one day where I xan sit, chill and be my self. When do you think that may be!? TTFN XXXX