Making a Change

It's amazing how changing one thing can change the whole feel and flow of a room. Sometimes we get so used to something that we don't even realise that we are affected by it, maybe it's because we know no other way or haven't really thought about it before. Last Friday, my new bed frame came. I had to replace my bed anyway as the thing was falling to bits and well a bounce around and messing about broke the wooden support beam and we were resorting to using a bale of animal bedding and an Argos catalogue to hold it up! Rather funny but not at all practical in the long run. So I ordered the new bed and it was delivered on Friday last week.

This meant that I was kicked out of my bedroom for a day while Natt assembled the bed, stripped the sheets and tackled some lovely black mould that had grown on the wall. It turned out, when we were looking at it, that the old bed frame, as it was ancient when I got it, was going rotten and probably had been for quite some years. The wood was damp and mouldy inside and the smell of it. I can't even begin to put in to words how bad the thing smelled, even from the beginning, but at the time, it was a generous gift from a friend and well, you don't want to look a gift horse in the mouth, but chances are, this thing had probably been going more and more mouldy over a period of 10 or so years and the spores, years of dust from use and other factors were choking my chest more than I ever realised. Not to mention the poor support the thing was giving my back. The mattress was also in desperate need of flipping (it hadn't been done in 2 years because it's not something easily done by myself.

Ironic isn't it, that my bed was a contributing factor to my illnesses and well, the damp you get in a ground floor flat just seemed to aggravate the problem further. Not going to say that my place is horrible, we just have a slight damp problem in the bedroom due to it being quite cold in there over winter, nothing a few home made rock salt dehumidifiers hasn't helped and my bedroom feels so much nicer and more of a place to relax.

I never noticed before how oppressive the bedroom used to feel. Like there was a vacuum of desolation and being miserable. All confined in one space. It didn't ever feel like I was ever in there and it became a prison rather than a haven and it made me feel trapped in the shadow of a relationship that should never have been. But now I find that the more of the furniture I had when I was in that relationship I replace, the further away from that time in my life I feel. I feel like I am literally throwing the past away and replacing it with a new and happy future. So far it seems to be working and I do feel happier and I do feel free of it all.

I just wish I could cast off my asthma as easily but unfortunately it seems that my asthma is always going to be this way. I saw the doctor on Friday (a new GP at the surgery who used to work as part of the MAU respiratory team) and she even knew about me and my case (turns out I am one of the more interesting cases out there, especially when they mention that it was because of me, certain doctors changed the way they see asthma). She looked at my peak flow diary, showing my usual wide variation of readings, often looking like some kind of relief map of the mountains, and what treatments I use and how they have an effect. Comparative readings are useful because they allow doctors to see for themselves what the medicine is doing and if it is clinically working. The worry is that I have been having near constant infections for nearly 18 months now and they have taken a toll on me. My body is tired and each time I get sick, it takes me longer to get better.

My medication list has grown over the last 6 months and I have been getting positive effects from the new medications. Admittedly I was a bit wary of morphine at first but now I justify see it as another everyday thing and despite not liking how it tastes, I am thankful for the effect it has in reducing the pain to a tolerable level. It is hard to understand how much something like this can hurt, but it can. And it does. The pain in the past has stopped me from sleeping for days, completely shut down any urge for food or drink and has even caused me to collapse once or twice. It's not anyone's idea of fun but who really opts for life on over 50 pills a day? I know I certainly didn't. Sometimes though, I am hit by my limitations and that can leave a rather nasty taste in my mouth. Simple things like going out for the day take a lot of planning and I have to carry an obscene amount of drugs, devices and other medical things as well as ensuring my chair has enough charge to last me.

Things are going to get better. But now its up to me to keep it up.

Loves
Wendy xx

I Keep Going...

Since my last admission, I have been slowly getting back to what is normal for me. The weirdest part for me is getting back in to my own sleep cycle which is very different to the regimented routine in hospital. At home, most days start around 11 when I wake up (although recently, I have been waking up around 8, hacking up rubbish off my chest and then curling back up and going to sleep). I then take my usual morning meds before going in to the living room, where usually Natt is up and about and we do whatever needs to be done. Some days that involves going out to town or other days it was staying in and doing whatever it is I do around the house.

I'm not once suggesting that I have an active or exciting life. Some days are generally spent vegged out in front of the TV (watching as Natt puts it, "visual chewing gum" the idea being that like when you get a piece of gum, you chew and chew in the same way that with daytime TV you stare and stare) or just generally pottering around my little place. I can't believe its been over 3 years since escaping from the drudgery of the YMCA and getting this place. I love this flat and knowing that I fought for it when it counted makes it feel all the more my own. We need a lick of paint and some new flooring here and there, but to be honest, I'm not in any big rush. You could take me to a palace and offer me a suite, but I would turn around and go back to my place any time.

I have had 6 admissions in the last year and we're finally starting to get something sorted again. I am under 2 consultants at the hospital and they're getting as many of the pieces together. The problem is that all we can do is manage what we have in the mean time. The last few times have brought about some changes to my medication, some meds added, others simply changed. I had some reservations about having certain medicines added to my roster, but now I am on them, I no longer worry about them. I think that watching someone become addicted to opiate pain killers frightened me a little because I was worried of going the same way, I have nothing to worry about and I am lucky to be getting the help I need. And with Jace, my family and friends around me, I have all the love and support I could ever need which has been the one thing that keeps me strong even though the things around me say "no". I refused to give up. I still do.

I don't know what the future has in store for me. Maybe I'll get better and never have to worry about being ill again, maybe I won't ever really get better. But the important thing is to keep up on hope and keep my head up, ride in my chair with style and pride and keep showing the world that nothing can keep me down or bogged under. I've been through too much now to let it all go to waste and go to pieces because of one thing or another. I guess the only way we can find out what is in store for us is to find out!

Loves
Wendy xx

My Medication Passport.

Going in and out of hospital is a strange, scary state of affairs. The worst part is relinquishing that level of control you have over your own condition. Living with it for as long as I have had to, I have had to learn my own ways around it and ways to make it more tolerable. I was feeling really dejected and frankly discouraged last time I went in (and the time before) when I had to explain on several occasions what I was on, when and how much. As a result, my medication routines got completely jumbled up and it made some symptoms come back and others get worse. It's important that I get the right meds at the right time because of the conditions I have. 

After feeling that way, I mentioned on Facebook how I wish there was a way to make this process easier and a friend, Kim Beattie, pointed me in the direction of a free NHS project called "My Medication Passport". This is a booklet that is carried with the patient (or installed on an Android/iOS device) which has all their medical details, next of kin and a comprehensive list of what medications the patient is on and how much and when. It leaves NO ambiguity or guesswork. Its simple and shows the times when certain drugs are taken and the routine. 

I admit I was a little dubious at first. The amount of times I have heard horror stories of the hospital "forgetting" to give the patients vital medication despite comprehensive letters from the doctor or anyone else, even in some cases, medication for life threatening conditions had been forgotten or decided they weren't needed. It worries me that this can and does happen. I want to spread the word about the Medication Passport to as many people as I can and see if we can get it rolled out as far as possible (I have already set up contact between the discharge lounge/pharmacy team at the Alex and the large Lloyds Pharmacy with the people responsible for it and hope that they will be distributing them in future, particularly for patients who go in and out on a regular basis.) 

I just think that this is a great idea. If anyone is interested in the "Medication Passport" please contact me via my email or via Facebook and I would be happy to have one posted out to you. 

Loves

Wendy xx