Keeping Busy

So, just lately my intestines seem to want to wriggle their way out of my belly button. For 5 weeks now I have been having pains whenever I eat anything and have spent hours on the "throne" trying to get rid of this feeling. It has been like I was trying to digest boulders and I felt everything move from the top, right round to the bottom which in a word was awful. So then I discussed with the doctor who said "well we did say we suspected Crohns and this certainly supports the diagnosis and the tests you had done". I'm being given another medication to help with the spasms and stomach pains and to make food easier to tolerate but this is a problem which I have been warned can wax and wane at any point, a bit like my asthma actually.

On top of that, I then find out that the fungal pneumonia is back (I get issues with this often if I'm run down). We  took a sample of the gunk to the doctor and he listened to my chest before saying "You have another acute infection." There has been a bacterial aspect as well and I have been on a grueling course of antibiotics as well as starting on a course of strong antifungal medication to clear the rubbish. Theres been a bit of blood in the stuff I have been coughing up but that usually means that I have been coughing a lot and that inside my airways is sore. It isn't a pleasant thing to experience and it does make me feel quite washed out and tired. It takes time to clear as well and it can also cause other complications as a result. I'm not overly concerned at the moment though as I am holding my own at least but it is starting to wear me down a bit more than I would like to admit.

So I have been a bit quiet recently because I have been spending a lot of time just lying in bed trying to shift this rubbish, although my Opus 1 booster pack box did provide me with some welcome distraction to it all. I am a bit of a TCG junkie these days and I find not just the games to be wonderful but I like collecting the cards as well. I've been cultivating a rather lovely collection of the Opus 1 series and am readily awaiting next month when Opus 2 hits. There looks to be some things that both of us want from the set and of course I do intend on completing my collection of Opus 1 cards too, but that is something to work on and of course it keeps me occupied as well. I am poud of my collection folder but its something that we can enjoy doing together. I have also started to sell cards that I don't need or have loads of. This way generates a small income which I can use to get more cards, kind of like paying for themselves. Getting myself a little reputation for being a good seller too.  Collecting trading cards is something Jace and I share with each other. Between us, we have a lot of Yu-Gi-Oh and Final Fantasy cards. His deck of choice is based on Final Fantasy X and mine on Final Fantasy VII and we are proud of our decks and we love how much fun the game is. Cards of much loved characters and it's still growing. .

I was supposed to get my new wheelchair, but there was a clerical snag BUT we are now just waiting for that last bit of notification to say "Approved" and that should be done in the next few days. The chair is built, tested and ready. Because I am on enhanced rates for both my PIP components (PIP is broken down in to 2 components, mobility and care), I am entitled to use the Motability scheme. To someone who doesn't know, Motability is offered to people who get the enhanced rate of the mobility component to lease either a car, scooter or powered wheelchair. You get a lease for 3 years so you don't own the chair, but this does mean that any issues you have can be resolved a LOT easier and after 3 years you are offered an upgrade (if you are still entitled) and when your lease ends and you continue with them, you get a bonus as well. So that is kind of nice. The new chair is basically a few models better than my current chair. I have a Karma Ergo-Traveller at the moment and it has served me beautifully. The new chair is a Karma Falcon which has a number of brilliant things that it does, such as the way you can move the armrests to allow ease to get in and out as well as kerb walkers and an oxygen bottle holder. Things that to someone like me make a difference. 

Although on reflection, these things also serve as a stark reminder that I am one of the "lucky ones" whose PIP was sorted almost immediately and without any kind of problems. Then again it is probably hard to deny that my disabilities do have a profound effect on my life and how I live, I know this. I have had to accept this. I hate it when people assume that people with disabilites are a certain way. Like if you aren't in a wheelchair then you can't be disabled or that people with anxiety are all just "taking pills and staying at home" (such an offensive thing to claim) and certain illnesses "can't be THAT bad because [insert name here] has [insert condition] and -THEY- get along just fine..." I suppose ignorance is bliss really.

So where this leaves me now, well I am just doing what needs doing, resting and keeping on top of my meds and trying to keep my asthma from flaring up. Yesterday was awful and I am really suffering for it today but knowing me, I will find something nostalgic to watch on YouTube, snuggle down and carry on working on my own Terraria "Railway" idea. I was inspired recently by the adventures of a certain blue tank engine and well, since I started work on it, I haven't been able to put my project down! I spent nearly an entire day crafting this out of materials and I have to say that I am really pleased with how it turned out. Even down to the use of marble for the face and the gold number 1.

Loves

Wendy xx

Overwhelmed

One thing I have learned through the last few years was that if there was nothing to worry about, usually they don't push for follow up. No news is often good news. I think its a bit of  a worry when something comes back from a test, especially when it is related to my respiratory health. My lungs aren't getting better, and I know all too well that there's a distinct possibility that they never will. Does this scare me? Of course, but it makes me more angry than anything. But it also makes me determined to defy the odds as I already have. The doctor was sure I would never get to 25 and here I am, still here.

I'm sometimes angry because I see all the people I went to school with, they are living their lives, be that from getting married, ticking off items off their "bucket list", travel or parenthood. I feel angry that because of this disease and the things that made that worse, I probably won't know too many of my dreams. I don't blame people for having wonderful lives, in fact to follow some of the people I grew up with and seeing them as they are now is amazing. I guess the thing was that at 29, I didn't ever expect to be constantly battling chest infections, struggling to even breathe or do every day things. I definitely didn't expect to be disabled to the point where I am practically stuck in a wheelchair and relying on oxygen and nebuliser medication. Maybe it isn't really anger, maybe its a little bit of jealousy because my life didn't pan out the way theirs did but that doesn't take away from everything I have managed to achieve in life so I suppose it balances out.

I don't see the "enhanced rate" of PIP as some kind of bonus. I don't actually WANT to have to have extra money from the government, yes it helps but it also makes me feel sad. Sad that I have to rely on this kind of thing because I can't go out and do the things I want to do. I like to work. I like to keep busy. I hate it when people tell me how "lucky" I am to get high rate disability benefits. I'm not lucky. I'm anything but. I hate it when people say "Oh well, I wish I could get as much as you get on benefits" but it only fuels the anger I feel inside. It makes me even angrier when people attempt to take advantage of me but that is a whole other kettle of fish.

So recently I had a sleep study done. This basically involved me having to sleep while wearing 2 pieces of monitoring equipment. One was to measure the respiratory output while I slept, including how much effort my body makes to breathe, air flow and whether or not my poor sleep recently is down to my lungs basically not liking to work anymore. My lung function is around 30-40% on a good day and on a bad day it is closer to 20-30%. That is scary because it doesn't hit home until you attempt to do some seemingly normal activity and then it knocks you for six. You never realise that something as basic as brushing your hair or taking a shower can be exhausting. Basically I may have to have a machine to help me breathe at night although my oxygen levels at night were also something of interest, I will find this out in March. The main thing I am concerned about is the results of a sputum culture that I had done last week. The results came back quickly (which they always told me was a bad sign) and they have called to discuss this. I feel a little wary as to what was found but in a way maybe that is a good thing because if they know the enemy, so to speak, they know the best way to fix it.

So right now I am struggling with an infection of Candida in my lungs and a heavy flu. With brittle asthma as well, this makes for a really vile cocktail in terms of how it makes you feel. I ache. I feel hot/cold. Sweaty and shivery and of course totally sapped of energy. Basically to put it in words, it feels rubbish but to be honest, at least we can get something sorted and after some help I will be back on my feet in no time at all!

Loves
Wendy xx

Its overwhelming really because there is so much already going on and I really can't stop what is happening altogether and focus on one thing, it just doesn't work that way. It's all come at once really and I feel kind of powerless to do anything about it. I know that I have to keep going and push through it but I feel like I just want to sleep for a month or so.