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 Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Type 1 Brittle Asthma, Various Allergies, Neutropenia, Chronic IBS, Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. 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.

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

Wednesday, 28 November 2012

Love...

The last few weeks have really tested my thoughts and feelings when it comes to the subject of love. Growing up, I never really understood it. My parents were never the lovey-dovey kind and they seldom showed any affection towards each other, let alone us kids. The one thing I remember the most, when it comes to my parents, was the constant fighting, the anger and the tears. I remember how the rows would start and my brother and I would be watching hugged up to each other as they screamed, shouted and even hit each other. I never really understood what the big appeal when it came to love was.

As a result, I never learned about distinguishing crushes and infactuation from real love. Not until I was about 16 years old and I had my first proper boyfriend. I remember the feeling of butterflies in my stomach, that electric when we kissed. The days spent together just talking about everything or climbing up the rocks (they were synthetic rocks set up at the lake for people to climb) and sitting on the highest point watching the wild rabbits scurry through the grass and shrubbery while the sun set just along the horizon. For 5 years we were there for each other, through thick and thin and I almost forgot for a while that I was one of the few kids out there that actually smiled when their parents split up.

Since that I have had relationships and even when they went wrong, I thought I had pretty much worked out what love was and how it really felt to be important and adored by someone. I'd lost my childish naivity about love and I really started to believe that love was something that came and went. Whether it was 3 days or 3 years, you were with someone then it would end. Its only recently that I started believing in true love again and I started to believe that two people could have a permanent connection. It was at this point that Jace came in to my life. And I have never felt so happy. Everything fit when I met him and I was able to see how beautiful love can really be.

Then this week, I also saw how much love can really hurt a person. I'm not talking about the kind of hurt that can make one bitter and twisted or skeptical about love and life. No, what I am talking about is bigger than that. I'm talking about the hurt that results from one person having the one they love cruelly ripped away from them, for what (as more research from all 3 of us has unearthed) should have never arised nor been a problem at all. A refusal by the UKBA to allow these two to be together, the resulting tears and the anger afterwards. All because one person couldn't be bothered to check the facts and their own protocols. I'm not going to go in to it in great detail but we are sorting things out slowly.

The UK Border Agency is supposed to keep us safe from people who want to come in and cause problems, prevent people and drug trafficking and smuggling in things that could be dangerous. Instead, Manchester's branch wanted to stop one of the most pleasant people I have ever met, and why? Because she had nothing better to do that day and was probably fed up of having no one to interrogate. Allen was sent away for no reason and we have been working tirelessly to find out why and ,ale sire that on his return very soon, the same chain of disgusting events won't reoccur. I won't have to watch my best friend as her heart breaks and she is denied the chance to even give the man she loves that one last kiss goodbye. I used to respect the work of the people in the UK Border Control. I know now that is no longer the case.

Loves
Wendy xx

Tuesday, 13 November 2012

Standing (well sitting) Tall...

I have been drawing once more and I have been doing some of my illustrations for my ADIM stories. Not only do I enjoy it and find the pictures bring my stories to life, but in some ways, I do find the process cathartic. I think its because of the process to draw the images and put a little of myself in there as well as the calmness of it that helps me greatly. I haven't been well recently and I think after a while it was starting to make me feel a bit down in the dumps. Its understandable really even if I don't like it,

I have found that being out of the house on my scooter, even if its just a rumble up to town, has given me a whole new lease of life. Its actually been a pleasure to go to the shops or just potter about town. There was admittedly a few small mishaps, but the more I do it, the more confidence I seem to get. Now I can confidently move around shops and can even get on buses with it (I am getting REALLY good at parking in the wheelchair space and can even get on and off without issues). Its good to feel more like myself again and my quality of life has improved vastly. The change in me has been outstanding. On Sunday, I even went out by myself without any fear or worry. OK I was going to see an emergency doctor, but I felt so much more able and I do think that this was worthwhile.

I actually like going outside and going and living my life in a way that makes me very happy. Its been 3 or 4 years now since I have been able to get out and live my life without the fear of my asthma or my painful back, Dr Pike had suggested this a few years ago, but I am notorious for my stubborn nature and not wanting anyone to see me as less of a person because I rely on my mobility aids. People are even understanding more and I am getting less judgmental comments from people (the old fat guy over the road has taken to sneering when he sees me, but to he honest, I couldn't care less about what he has to say, hes just a jealous old man who just wants to make everyone as miserable as he is), I have also managed to make the scooter a bit more my own style with a well placed decal, and a few other things that officially mark my scooter as mine. I'm never giving up my independence again.

I even LOOK like me again and when I smile, its warm, friendly and inviting and when I laugh out loud, its been so much of a change in me. I forgot I think about laughing and enjoying my life. Being unwell all the time, it does get easy to forget about the nice things in life, but earlier, as we were walking to town and Becky was playing with my speed control, I actually laughed out loud! I was having such fun! My vibrant, bright red hair blowing behind me as I wore my favourite black trench coat with a cheerful shirt under it! I even saw my ex, who has FINALLY left me alone and I trundled past without ANY fear. That to me was probably one of the most important parts as I now finally felt strong enough to not even bat an eyelid. Then again, an email I sent not too long ago made it quite clear on how I feel and how I didn't want this person in my life ever again. I just carried on with my life as if there was no one in my way. Well really, no one is in my way. Not anymore. I had a lot of fun going up the hill and go shopping with Becky. As I said, it's great to get back to being me again. I'm actually looking forward to things again and in particular, my birthday on Sunday is going to be fantastic. I'll be spending time with people I care about and next Friday, we will be adding another member to our entourage. Becky's boyfriend Allen will be arriving in England, I really hope he likes it here! And before we know it, Jace will be moving in with us too.

Loves
Wendy xx

Saturday, 3 November 2012

What Ever Life Brings...

One thing I have rediscovered is my love of Autumn, the leaves changing and the way that they swirl and become vibrant colours is something that inspires poetry or for me to get my paintbox out. I have been enjoying the rumble up the hill to town on my scooter, there is something about finally getting my independence back that I have really embraced. I still have to carry a lot of medications with me as well as carrying all the usual essentials, but what amazes me the most is how something I had been so dubious about has made such a drastic change in my life. In short, I love it. I love the confidence it gives me to do the things that I like to do without having to worry too much about the pain or my breathing becoming an issue.

I know that having the scooter has meant a load of Becky's mind as well, I think she must have been going mad with worry whenever we went out and I was becoming so unwell as a result and I think she must have noticed the reduction in my sanity that comes with having to stay indoors and close to everything needed to just stay alive for yet another day. I don't think anyone really knew how much of a struggle things can be sometimes and how it can make me feel. Which sometimes led me to extremes such as self-harm, which takes a lot to admit. I have struggled with self-harm ever since I was about 14 and I used to remove the blades from pencil sharpeners or disposable razors. I am lucky in some ways because there have only been a few instances where that has caused serious scars, like my hand and left forearm. I do struggle with it sometimes and I am not afraid to admit it, but there have been more recent occasions which have resulted in my cutting, but I am not doing it anywhere near as often as I used to.

I'm not afraid or unaware of my mental health issues, in fact, I live with them day to day. I see the effect of my emotions and I do feel bad that this is how my mind is sometimes, but at the same time, I am thankful that I finally got the courage and ASKED for help, rather than leaving it to get to the point where suicide would have been the only way. And I am thankful for the people who have always been there, be it at the end of the phone or even here in my home with me. I am lucky to have a support network and I feel confident in myself and my own personal strength. Sometimes, not being afraid to ask for help can mean that you are finally ready to let it go. Becky said that to me, and I believe her.

Tomorrow, I am going to do something different. I am going to church with Becky. I am not Christian, but I do believe there is something there. I think I need to have a word with the "Big Guy Upstairs" because there have been a few things that have happened as of late and I need a bit of help to understand how I got to this point. I am not converting to anything, but just trying to find out exactly where it is I belong in all of this.

One thing I do know for sure is that in having to learn and accept my life with my disabilities, it taught me a lot about not judging others on appearances, empathy and having the confidence to say "Yes, I have an invisible disability, but I refuse to let that stop me." One such occasion happened today. I was in a shop and a group of people were in my way, after a few "excuse me" and a beep of my horn and I got through, but this kid was standing there, gawping at me, like I was some kind of circus freak. Becky challenged him and asked him if he had a problem. he didn't understand what the problem was, but his mother did and soon everyone made sure that that young man knew what he was doing was unacceptable. A lot of them even nodded when I said "yes, I have an invisible disability, so what?" May have sounded a bit harsh, but its true. I am not a freak and I am not something there for the amusement of others.

Most other people in town were alright actually. Some people who had seen me limping through before actually said they were glad to see me getting around better and not having to limp anymore. Others smiled and helped me out with things. Admittedly there was a young boy who nearly ran in to my scooter, his mother apologising profusely! But it was fine, it was a crowded place and even the most able people were struggling through.

Loves
Wendy xx 

Thursday, 1 November 2012

Rude...

I do wonder sometimes why people get off on making others feel bad about their disabilities and problems. I'm no stranger to the prejudice that comes with health problems, but today really made me wonder about the mentality of people these days. The weird thing is, I am not talking about those in my own peer group, I am actually talking about a handful of very rude older people in the area. Not all old people however are rude, but it is the select few that really get my back up.

Since getting my mobility scooter, I have been able to get myself out of the house more and I have been ecstatic about this. Before, even the smallest and seemingly most insignificant jobs would leave me struggling for breath because of my asthma or in a lot of pain because of my arthritic joints and back. A lot of my health problems are invisible, yet I can't actually put it in to words just how painful and inhibitive they can be. Its taken a lot for me to actually realise and ask for help in a lot of this and have been frankly quite miserable in being stuck indoors most of the day and I should have spoken out and gotten this sorted over 18 months ago when the prospect of a wheelchair or mobility scooter was first mentioned by my GP, it was actually because I didn't want to LOOK disabled and have people judging me that was one of the reasons that I held off for as long as I could.

For the most part it has been wonderful. Learning how to use the scooter (which is actually been one of the most fun things I have done in a while, and the more I do it, the more confident I become) and popping up to the shops and back and even some journeys a little further afield. I did a trip to Sainsburys yesterday and it was like a completely different experience, even spoke to some lovely people and even had some people helping me through things like checking out and packing everything up in to my basket.

Today was a very different experience. It started out when I went to meet Becky in town. There is a rather unpleasant man who lives over the road from us. Whenever we see him, he is always shouting rather unpleasant things at people. Today I think he decided that he thought it was my turn for his spite, so as I was walking (which is a slower pace than most and with a very pronounced limp due to my back and joint problems, I only really walk when I take the bus somewhere, sometimes I even have to use crutches because my back is so bad), he decided to shout up the road at me that "You CAN walk can't you?!" I decided to ignore this rather rude man, he is the only one in the area that hasn't been supportive of me getting something to help my walking (I bumped in to my neighbors yesterday and they were pleased that I was finally able to get around properly once again). Later, I went with Becky on another little wander to Sainsburys and back and for some reason about 4-5 people in the supermarket were the most rude I had ever experienced. First off, I was with Becky at the Bakery area and this older man decided that he was going to force his way in front of me and nearly knock me in the face with his basket! Instead of saying "sorry about that" he just glared at Becky and myself! How rude! Then I had a group of old ladies watching me, and the remarks they were coming out with "whys she got that?" "she doesn't look disabled" "I wish I didn't have to walk", well it took a lot of self control to not turn around to those women and say "I'm sorry that I have several rather serious and invisible illnesses. It's not like I asked for this, so how dare you pass judgement on me on face value!"

I think that anyone who can judge another person on face value, whether they be young, old, sickly or well, ought to take a look at themselves. Who are they to justify how they behave towards other people? Just think, maybe people feel bad enough about themselves without being made to feel worse because they actually ASKED to be helped and decided to improve their quality of life! I'm not going to let this experience put me off using my scooter, because frankly, why should I feel bad that I am getting around better and able to live a more independent life. And if there are people who have a problem with me or the way I have to live my life, well frankly you can write it down, place it in an envelope and insert it in to whatever oraphis you choose.

Loves
Wendy xx

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