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

My Last Hope

Since being told in January that there was nothing left for me, nothing left trestment wise to help my asthma i was preparing for each year that went by for ny life to get worse. My lungs to get worse. Thankfully ive been given a lifeline. I change my local consultant when i move to Cornwall and they have done tests that show i have PID which is primary immune deficiency. As i have this, they have said this is the reason to which i am getting around 15 infections there abouts a year which is not only causing my asthma to flare but also my lung function to permenantly be done and ive now built up huge amounts of irreversable scar tissue in and around my lungs. It suck. The worst thing about it all is this could have been solved years ago. I first had this picked uo 4 years ago but was told there was no treatment when in fact therevwas and there still is. Im just so glad I moved to Cornwall as it now means ive been given hope. So my new treatment IgG transfusion. Its pretty technical stuff and again as I said before, without wonderful blood donors, my life wouldnt be able to have this. Each 20ml of my treatment is a few thousands worth of donors bloods and each week I will be recieving 60ml and that is for the next year alone. If the treatment shows improvement I will be staying on this untill they find an alternative. This could be life. For my first ever treatment, me and my wife watched the nurses set everything up and put the needle in my belly. Next week though its our turn. We will be taking a hands on aproach so that the quicker we learn how to set up the pumps and do everything in a safe manor, the quicker I wont have to keep coming to derriford hospital. Each infusion takes an hour to go through. I can only have a maximum of 20mls through each pump at a time into that specific area of my tummy to prevent damage. Yes it take a long time to go through but once its running, youre free to do what you like, well withing reason. On this occasion, I did have a reaction to the blood product but this was to be expected as it was a foreign body being placed into the skin surface of my belly. Today it is still pretty red, sore and bruised but itll settle. Im just praying this is the miracle treatment that could give me some form of life back. Im not banking on my life to be exactly the same as 5 years ago as thats impossible, I have far to much damage, but even if im semi there I will be impressed. Here is a picture of my treatment

TTFN XXXX

Yuk

Ok so yet again things are crap.

All weekend ive felt like shit. To put it plainly.

Saturday my oxygen levels wanted to start dipping and by last night i was down to 89%. My pulse was up at 160 and i was trying to be sick...no that sounds wrong. Basically following my tummy surgery it is impossible for me to be sick so my body was going through the motion of being sick but no liquid from my tummy could actually escape.

Ive literally been a vegetable in bed all weekend because of feeling so poorly and im also suffering from yet another migraine.

Tonight i was checking my oxygen levels and they are now sitting at 86%.

I thought my sats monitor was playing up initially so i put it on my other halfs finger but it came up at 98% so its clearly just me.

Im refusing to be admitted. I cant. Next week we have something really important we have to do and im not missing out on this opportunity.

Really wish my lungs would get a grip and give me a break

TTFN

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Happy But Frustration

Ok ok so the main part of the day has been fantastic I took Dixie to the camel trail whilst my other half was at her fitness class and she blinking loved it. Running up and down, and then of course we found a river. She was straight in. Shes such a water puppy, its great to see. With the weather being so great and her amazing reaction with the weather, weve decided that tomorrow we are off to Par beach. Fingers crossed shell remember the beach and continue to love the water. A medical update: I had my clinical psychologist from Birmingham ring me today to check up on my local care and to see how I was coping with my severe PTSD. I had to explain to her that the local care has infact failed. Ive had no follow up so ive been trying to keep coping on my own. Lets just say shes not impressed at all. In other medical news, my lungs have remained cruddy, sats still dropping and needing lots of salbutamol. Im still subconsciously ignoring it though as I want to live my life. Im not giving into my asthma. I refuse. In complete other situations (the other half of my title), im getting really upset and frustrated with my mother in law. Shes picking fault with everything we are doing and constantly causing arguments. Its driving me insane. I dont feel like a 23 year old anymore. I feel as though im 10 again, living with my mum constantly being dictated to. Im pretty sure it shouldnt happen. Ok granted I ignor all the arguing between my partner and her mum untill it involves me but with how my mental health is its driving me further down. I reay have no idea what to do. I feel the only solution is to move out but untill theres something withing the council we cant. Its making me feel crap!! I have a huge headache now so im off to sleep now. TTFN XXXX

Yet Another Appointment

Musgrove Park was my hospital today and this was for my hip. Last year I was diagnosed with AVN and an impingement in my right hip so they decided to stick a massive needle into my hip joint and put steroids into it. This was more to try and control my pain rather than treat it. Sadly though since this my pain has just got worse and worse and im taking lots more morphine. Todays was my review appointment following my procedure and and the doctor asked how I was getting on and what its been like for me. I explained that for roughly four hours post the procedure my hip was perfect. Absolutly no pain...the next comment from the doctor was "and dont tell me, when the local wore off you were in agony". To which I obviously smiled and said, yeah, how did you know. She explained that there are a few things going on in my hip and potential some more theyve not yet seen. So they are sending me off for yet another MRI scan but with dye this time. Only of the things she said it could be is a liberal (not sure if this is the right spelling or not) tear. The reason I may have this is because I have deterioration of my femerol bone, there is now a point bit at the top which has potentially sliced through my liberal bit (which is the lining between my ball and socket joint, AKA cartilage bit. She did exain to me though that there could also be other things going on. All of which will show in the scan. To treat the tear, I got told that this is equally as major a surgery as what a hip replacement would be. She also informed me that if it turns out there are other things going on, the only way to fix them would be a total hip replacement. U.fortunatly though this would mean yet another general, and as she said, as ive stopped breathing on the last two, im going to have to be treated wisely and a lot more carefully...guess theres no harm in that though hey c; Now we are back home and in bed. Had a lot to tjink about again and my head is going mental. Wach appointment seems to be screwing my head up that little bit more. I dont think I can actual take much more. Y cant my life be simple. I want to be like most average everyday people!! TTFN XXXX

Pathetic

This morning I had to take my other half to the hospital for an appointment. She had to have her braces adjusted, a few other bits tweaked with and her jaw looked at to make sure everything was going in the right direction for her surgery that shes having towards the end of the year...hopefully. Thankfully everything everything is going perfectly and the treatment really is starting to work. The sad thing is that with things being played with today, shes got lots of pain so now we have to step up the pain releif again to make sure it doesnt get out of hand. Prior to us leaving, we had a huge barny with my other halfs mum. She knew we were going out and although my partners dad only came put of hospital last night she insisted that they had to go shopping. (Even though I could have done it). Wuth us all being out the house, she asked us where we were going to be putying Dixie to which we both replied, in the kitched like we always do. She wasnt impressed with this because unfortunatly on the weekend when we were at the hospital for 6 hours Dixie chewed the table. She wanted us to put her in our bedroom to which I refused because not only is there electric at the end of the bed and to the side of the bed but I have all my drugs. Thankfully my father in law agrees that itll be far to dangerous to keep her up there. Hes not nothered that the table got chewed because as he said again today, they didnt pay for the table and they are puppies. My mother in law argued that shes not having her stuff chewed which is why they got their puppy cage trained. As a result now they are telling myself and my partner that we have to by a dog pen for dixie to go in as they dont want to risk her chewing other stuff. Ive told them if they want her in one, they can pay for it as the are roughly £50. I refuse to cage train Dixie. So may say its amazing, but the idea of licking my dog in a small cage just doesnt appeal to me, not only is it restrictive for them, but they have no fluid or anything. I also see how stressed their puppy gets. I also panic and worry because when I was 16 I was involved in a house fire. Our old family home infact and I worry that if this was to happen again now, then Dixie would be trapped with no where to run. Why would you risk it, it doesnt make sense. Thankfully, no more has been said on the subject since we got home, but im sure it will. The rest of the day has generally been ok though. Im suffering really bad with my muscles thpugh, they keep giving out on me and I cant hold me head up again. Im having to prop it up on pillows. I really wish I didnt have this muscle disease. The rest I can cope with...kind of. Well, I best be off, I have a hospital appointment for myself tomorrow. TTFN XXXX

Mothers Day

After a bit of an upraw last September with my mum, a day after I had surgery, I move out and moved in with my girlfriend. It was all a rush, I wasnt mentally prepared or physically prepared come to think of it. Dont get me wrong, I love my girlfriend more than anything, but when you have my disabilities and illness I wanted to get hospital care sorted out first etc and move in gradual. I guess it wasnt meant to be. Sadly, moments with my mum now are just as rare as what they were when I moved out the first time when I was 17. I absolutly hate this, its not how a mother and daughter relationship should be. Fir a brief time when I moved back in with mum, our relationship was fantastic. We went shopping, out for coffee and out for random drives and walks. This was only after I was on the brink of death following and asthma attack which pit me on a ventilator. My mum very rarly rings me up either unless its when she wants something. Most of this bad bonding started when I told her I was gay. She seemed gutted and never liked my girlfriend. She would say otherwise, but if you were to see how she treats me when I have my partner around her to how she treats my dister when she has her boyfriend, you would see the difference. All this though has made me think today about how much of a different mum I want to be to our children. I want them to grow up knowing they can come to us no matter what, and feel u dlessly loved. I do miss my mum, and I love her masses, but today with not being with her, it has really hit home. I wish I lived closer so that I can pop round with her card and present rather than having to send it her in the post. I also just wish we simply spoke more than once in a blue moon. I read all these stories of mums wishing their daughters were still alive and vice versa, and I dont want that to happen. I know eventually it will, but im only 23, I dont want to grow up wishing things could be different. Well, ive said happy mothers day to mum twice today, and made it clear with how much I love her. I guess I cant do any more than that. To all the other yummy mummies out there, happy mothers day to you too!! TTFN XXXX

Flu-Urgh

Things got all to much this morning. I had a rough night and it continued through to this morning. My temperature is still sky high, the pain I have in my joints is ridiculous, ive never experienced anything so bad, my migraine is still here and theres so much more im suffering with. With it not shifting, I wasnt sure of what to do and I was getting worried so mu other half kindly rang the doctor for me. My partner did tell them that I wasnt able to drive because of how poorly I am and how drugged up on morphine I am to try and sort the pain. We had asked for a home visit but the doc who was talking on the phone was an assband said, no we wont get a home visit we either have to pay for a taxi or get a driend. Thankfully my partners dad offered to take me in, but it was really unfair. After being to the doctors, to which my other half had to do every step with me as I still have no coordination and I feel mega week, it turns out I have really bad flu. He said if theres any sign of it moving to my chest I have to be seen immediatly because of the obvious. Ive never had flu before and bloody hell I wouldnt wish it on anyone. The scary thing is ive had the flu jab so xan you imagine how id feel and how much worse id be if I never had the jab!! My other half has continued to be a star though. Really looking after me and literally not leaving my side other than to take the pup for a walk...which she didnt want to do because of leaving me but I guess its only fair!! Well, as its pancake day, and ive not managed to eat anything all day, im having some alpro soya almond milk pancakes bein made for me. I hope the I can both manage to eat them and keep them down. TTFN XXXX

Stressed Beyond belief!!

Okay so weve had the puppies for nearly three weeks now, and as mentioned in previous posts, my other half mum has been getting beyond rediculous with her behaviour towards everyone in the house. One minute there something wrong with her puppy as Dixie (our puppy) is doing more puppy like things compared to hers then the next minute Dixie is a little shit and is doing everything wrong posdible. She is also still reading far to much on the internet and constantly telling us all these different stories and how (in random peoples minds) think our puppy should be. I mean you wouldnt tell a new mum how their baby should be so why do it with a puppy. Last week, our puppy fell into the pond and nearly died as a result. As a result, for the last week, me and the other half has been banging on about how the pond needs to b made puppy proof...yet nothing has been done and suprise suprise, their dog walked across the net and nearly repeated Dixies move from last week. Thankfully we managed to retrieve her before it got worse!! There was a huge barny in the house today because the other halfs dad is getting equally pissed of with the whole situation with her mum. He (and I guess I do) wish we never got the puppies. Yes I love her to bits but the stress, tention and arguments it has caused is not right. A family should not be torn up by something so minor. On other notes, I got my wheelchair last week curtosy of the NHS and theyve come up trumps. Theyve provided me with one of the best action chairs just so I can get out and about again doing what I used to enjoy when my.musvles were perfect. As always with me of course, ive already snooped it up and have spongebob bands on the inner wheels and those annoying plastic things that go on childrens bike wheels on my spokes so I can piss everyone off in asda. Result!! We also tested Mr Wheelie down the camel trail on saturday and I loved it, I co u ld take photos without being exhauted, we could even get twice as far down the teail because I wasnt exhausted or out of breath. It really was perfect and made my day. Plus it was a day out of the hoyse with my lovely lady just the two of us, being us again. Well I best go, have to be up in 7.5 hours to drive to birmingham for an immunology appoint. Suvch fun!! TTFN XXXX

The Start!!

As of yesterday I have two weeks and one day untill my surgery. I have to admit I am officially now starting to shit myself.

Yes ok mum is going to be there, (only just with persuation might I add) but the last time I had an operatio where they knocked me out I stopped breathing. That was before my asthma was as bad as what is is now. So yes, I can officially say im SCARED!!

Worst of all, ive told the girlfriend that she can be with me before the surgery (so now) and the time post the surgery. She really wants to go up the day im having the operation but ive refused to let her. Purely for the fact that the hospital isnt in the safest of areas and im worried about her being on her own at certain times of the day. I kind of wish she was here for the day of the surgery!!

The other bad thing about this surgery is, I cant eat food for two weeks before the operstion and for a fair few amount of weeks after. My surgeon has told me I need to have three liquid slimfasts a day and a bit of yoghurt inbetween them. I am sick of them already and yesterday was my first day.

I dont know how im going to survive.

IM SO HUNGRY RIGHT NOW

TTFN

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