For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Thursday, 17 July 2014

Can Do!

Looking back, I remember what life was like when I started this blog. I remember how miserable I was, stuck in a shabby YMCA flat, barely able to go out due to my chest getting tight and wheezy and feeling like a prisoner in my own home. I hated it. I hated myself. I gave up in the end and started dressing only in huge shirts and hoodies. I gave up on life and I think that if I had carried on that way for much longer, I would have ended it because I really felt like there was no hope. No reason to keep going. No one was helping me at the time, partially because I didn't know who to ask, and I was still running around after other people, cooking and cleaning when I couldn't even stand up properly due to my sore back or breathe properly. I wasn't sleeping because of the noise from other flats (sometimes it was like living next to one night club and below another) and after a 13 week "course" at the Job Centre, I was so driven down that I couldn't carry on looking for work and have been on ESA ever since due to my physical and mental health respectively.

Those "courses" the Job Centre send you on are a waste of time and money. You go in for two days a week and you have to sit in a room with other people (often the concept of "intelligent conversation" was "'Ere! D'ya watch Big Brother?" and then you sit filling in inane worksheets about job hunting (the whole thing repeats every few weeks so you do it all at least twice) and then when you finally get let out, you're totally burned out and it is frankly depressing. My physical health has slowly become more of a barrier towards working. It isn't that I wouldn't want to, it's just that now I can't work. I can't guarantee where I'll be from day to day, whether or not I am going to be in hospital or not, and can barely walk from my bed to the toilet on the worst days. I am oxygen dependent and have to use my powered wheelchair to get around. The reason for this decline in recent years has been just because of the illness I have and the fact that like all lung disease, it does tend to deteriorate as you get older but it had a lot of important factors which made that happen faster. There's not a lot we can do at the moment, so I try my best to keep positive and hope that things will one day improve. After I had an attack in front of my advisor we knew it was time I went to ESA. Life on ESA is good. I'm never short of anything and as it's topped up by extra components as well as DLA, I like to think my life is comfortable and a lot easier. The best bit though is not having to sign on at the dole office every 2 weeks! I do get a bit bored and antsy though after sitting around all day every day or being confined to my bed.

My life is a far cry from what it was. I hated my old life and by the end of it, I was almost ready to give up because I had convinced myself that no man would want me and as a result, I had no confidence and well, its hard to move on and forget about what someone used to do to you when you have to live with the effects for the rest of your life. Don't get me wrong, I owe my illness for making me a stronger person emotionally and showing me how much I can push through, but if someone offered me a fresh pair of lungs which would work and mean I'm not weighed down with an oxygen tank anchor, I would go for it. No question.

I probably shouldn't have gone out today, but I desperately needed to break the boredom. I've been confined to my bed as my infection is starting to kick back at me. I've been bringing up more thick green stuff and it seems to get stickier as days go by. But so long as I keep my chin up and keep going, we will beat it. I may be connected to an oxygen tank, but I have a "can do" attitude!

Wendy xx

Boosting my Confidence

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.

I 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.

The 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.

I 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 person.

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.

Wendy xx


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