Over the years, I have gotten used to having setbacks and only getting so far before things get worse again. It kind of comes with the territory for me and it can sometimes be quite difficult (not to mention, frustrating) when no matter what you try, it doesn't seem to be making any headway. Its even harder when, despite the extensive treatment I am getting, I struggle to get a peak flow over 200l/min and I do get upset sometimes and I do feel disheartened and I do feel a bit like I have to face something I would rather not just for my own safety. I'd like to think that since getting more equipment at home, things have been so much easier. I'm not going to lie and say that my life is ideal or enviable but I like to think that it is at least comfortable.
am glad of my medical teams and the people who work to keep me well.
There is a new scheme at my doctors for people like me who are more
likely to become so unwell to warrant an emergency hospital admission
unless seen by a doctor quickly. They want to help me, and my carers,
come up with a strong care plan so that if/when things do start getting
ugly, I won't be waiting a week to see a doctor and run the risk of
getting to that critical stage where all we can do is call an ambulance
and go to hospital. Also, we have assessed my oxygen needs (although the
GP actually questioned the nurse's suggestions for the oxygen to just
be for walking around, the doctors said that wouldn't be appropriate for
me and have agreed with them to carry on with my usual routine, o2
during the day but unless I have had a particularly bad time, try and
avoid sleeping with it.) and it looks like the home oxygen is going to
be a permanent thing. I don't mind it as much these days, I know its a
responsibility to make sure that I am using it correctly and getting my
refills twice a week.
You see, it was originally a
trial to see if I would benefit from it and its been decided that I
really do benefit from it and it has changed my life considerably.
Admittedly, having to keep pushing my cannula back in to place is a pain
but its something I can and will be able to adapt to. I am so thankful
for the oxygen nursing team at the Alex as well as my consultants and GP
because without it, my life was frankly so miserable and I really was
struggling to find reasons to do anything anymore. I think I did get a
bit depressed because I am never really "well" and sometimes I am stuck
between the point of going in to hospital and managing at home. I like
to think that I do try and manage at home as much as I can, but there
are days when I feel like its too difficult. On those days, I tend to
lay low and rest.
One thing that has come of being so
much better has been that I have actually felt like socialising again.
OK I go to a group where I can talk to some new friends, play a few
games and generally feel relaxed and enjoy myself. I won't put the full
details here for obvious reasons, but being able to go and play the game
with other people has really boosted my confidence. The only thing my
ex did that was positive was introduce me to a card game called
Yu-Gi-Oh. I've been collecting the cards again and making some rather
fun decks to use, sticking to the 40 card limit which actually works
better than 60, and I enjoy it. OK I am yet to win a battle at the club,
but that's why I have spent some time reworking my "Cyber Dragons" deck
as well as adding some powerful things like the sought after "Blue Eyes
White Dragon" and "Light and Darkness Dragon" cards.
club really has brought me back to life a bit and I love going to see
the others, play some rounds and talk about pretty much everything else.
We do play tournament rules though and it turned out that the more
"basic" version of the game we used to play was actually wrong in so
many ways and didn't adhere to most of the rules, plus cheap, fake cards
are totally frowned upon! Who would have thought that I am actually a
social person? I enjoy it and I feel confident in the club. The others
have made me feel welcome and they have even said that if anyone comes
to cause trouble, they will be kicked out. Since making new friends, I
have been growing in such a way that I am actually dressing like a woman
and acting feminine.
I play the game with Jace as
well. It is one of those bonding things that we do and enjoy. He is a
huge fan of the game and helps me build the best decks I could have.
It's good to have something, well a lot of things, to share with someone
and we don't get pissy if we lose. In fact, we tend to smile and try
and work out better strategies, which for me is great fun. We also like
watching films or anime together, gaming and generally just enjoy each
other's company. I am proud of Jace for how he's coping with things
himself, particularly when it comes to my illness and what that means in
terms of quality of life. He knows that until I need new lungs, the aim
is to at least keep me comfortable and make sure that I can at least
enjoy life. Even if that means doing so in a wheelchair and carrying my
oxygen tank around with me.
guess it has been recently that I have really started to appreciate the
little things. I even did something that I haven't felt confident
enough to do for years, clothes shopping. I brought some nice Hogwarts
shirts and new jeans. Also I brought a simple purple dress which looks
great with the jeans and actually complements my shape. I am happy that I
am back to a reasonable size 12 and it feels really good to have the
confidence to show my body off (of course not in a dirty way, in a "I
take pride in my appearance" way). I like going shopping with my friend
and we sat yesterday talking and having fun while we had lunch at
Subway. I have really gotten in to Subway recently. I enjoy a nice
sandwich and drink, sit with friends and talk over everything. My
friends are trying to encourage me not to be so shy about things.There
really is nothing to fear now. Whats the worst that could happen?
Pathetic people talking to other rather pathetic people and saying what
they think. I don't actually care what some people think or say about
me. I know who I am and the people who know me know that I am a nice
No one was or is judging me apart from myself
and my own low self esteem. In that, I managed to convince myself that I
was this fat asexual lump that people look at and say "look at the
state of that..." but I found that all I was doing was putting my own
negative feelings towards myself on to other people. No one is that
bothered about how one person looks at any one time, just so long as you
aren't dressed in such a way that makes a scene. I'm really learning
about how to be confident and how to stand up and accept who I am. And I
like that person, yes I am a little dysfunctional at times but hey, at
least I can hold up my hand and admit it! I do see my physical and
mental flaws but I don't think that makes me "damaged goods" or less
worthy of happiness. Happiness (and unhappiness) is created by the
individual making the choice for themselves on what they want. It's not
anyone's "fault" or anyone causing the unhappiness, we should take
responsibility for our actions and how we perceive life. It took me a
while, but I know that now.
3 years ago