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.

Thursday, 29 March 2012

Life with Becky

Life with Becky has been brilliant. We have both been here for 2 weeks now and its been absolutely awesome. I mean we had some minor teething problems to start with, with Becky not living away from home before and me well, being a solitary creature at the best of times, its been something of a learning curve for both of us. For me, I have had to learn that allowing people to help me is not a sign of weakness, more a sign that I am accepting that I so have some limitations and sometimes I do need help with things.

I also noticed that one person in particular keeps talking on their blog about something that happened in the past. Something very personal and an event where I was hurt more than anyone else would ever be able to comprehend, unless of course you have experienced these things. They are not anyone else's affair and they are not to be used frivolously or discussed by anyone other than myself. I do not want my past printed up on the internet in such a way and if this does continue I will be seeking legal council as it is a clear violation of my rights as a human being to have privacy. Furthermore as only myself and the people who did those things to me are the only people who know what happened, and I do not wish to discuss it here as it is frankly not something I want people seeing on the internet. Its not clever, its not funny and it is none of anyone else's business.

Now that I have cleared that matter up, I can now focus on the positives recently. Well recently I changed my look, dropped a bit more weight and have been spending time with my 5 chunky lads. Oh and I have someone very special who has come in to my life, I'll be seeing Jace soon and I can't wait. I think it may be very safe to say that this Wendy is smitten and happy about it. I can't wait until I have bright blue hair and a huge smile on my face, when the rash (caused by a viral infection and mild allergy to something) calms down, I will take more pictures, but for now, I will leave you with a picture of me and Becky when we were happily walking around a few days ago.

Loves
Wendy xx

Saturday, 24 March 2012

Angry Birds, Good Times and Guinea Pigs...

Its been all go here since Becky moved in on Wednesday. Its been a week of forms, sorting things out and making sure it all went as smooth as possible. The trip on Wednesday was eventful but hey its the things that make the journey fun that make it all worthwhile. I think... I think my next few weeks are going to be all the more enjoyable, if not a little manic. I'm glad that its all happening and we enjoy the things we do.

My love of the arts is still as bright as it ever was and I have been at the creative side of things again, has to be said, I am enjoying the Naruto illustrations again and they are good fun to draw. Its nice because the piece I am currently working on has about 13 characters. All smiling and the bond between them is just amazing. I relate to so much of this anime and it makes me feel like I am not alone and there are so many people who are there for me and make me realise that I am a worthwhile person.

I need to break a certain habit though. A habit that involves me doing some pretty nasty things to myself. This habit has left me with collections of scars that until recently I hid behind baggy clothes and I never allowed people in close enough to know what was really bothering me. I have always been that guarded I guess because I was afraid that if people knew then the age old problem of people using it to their advantage or personal gain would happen again and again so I tended to hide myself away and not talk to anyone about whats bothering me.

I have also been enjoying the company of the guinea pigs. Kadaj is still... well Kadaj. Hes a chunky boy nowadays and he wheeks at me for fuss and attention. Then there are his cagemates, Gizmo (a big snuggly lump of love and fuss) and a baby, a white abyssian called Zell. Zell is a funny little fellow, hes very talkative and affectionate. He kind of reminds me of someone. I watch him and he reminds me of my little Hope.

Its been nearly a year since I lost my baby Hope. He was a funny little thing and the way he used to chatter and talk to me. I knew he was blind and deaf, but the way he found me by scent and found my scent such a comfort was just amazing. I have never felt that kind of bond until I had met Hope. Hope was affectionate and would often squeak until he was placed next to me. Then he would lie at my side and chatter happily until I woke up and would be greeted by him licking my face or curling up next to me and falling off to sleep at my side. Zell is in some ways the guinea pig Hope should have been, growing larger by the day and not handsized, in to EVERYTHING and anything, chatty, inquisitive and just so funny to watch!

His brother, Tenzou is much more like Alphonse in personality. Although it is funny the way he chases Gaara around, reminding me how Alphonse used to chase and play with Patch on a regular basis. I miss Patch often and I often think about him. He was one of my best friends and he was there for me in some of the most difficult times and even when I slashed my arm with a freezer saw, he forgave me.

What made me angry about my cutting the other day was the fact that I felt guilty. I had promised Patch that after that one time I would stop. I had promised that I would never wound myself like that again. I just felt so guilty afterwards, but at the time I had needed that release. I had needed something to relieve the pressure of everything that had been troubling me. I have cut again recently and it is something I still have trouble with. Even now. Weird isn't it? But my PTSD has had such an effect on me. I won't go in to details here, but I will eventually go in to my recent diagnosis of PTSD and where it has come from.

Loves
Wendy xx

Saturday, 17 March 2012

My New Companion...

Its been 3 days since Becky moved in with me. Its been a few days of filling in forms, telling the council and benefits people that now I am no longer on me own. Its a long and monotonous process but when its done, its setting us both up for as long as we have this arrangement. Having Becky live here is easily one of the best things I have ever done. It has changed both of our lives in ways that neither of us expected. Becky now has a chance to learn and grow as an adult and me, well I am finally getting some personal care and assistance, which means I am not run ragged day to day.

Lately I have been thinking about what my dreams and hopes for the future are. I have started journalling again and writing, drawing and sticking things in so that I can look back and watch my own progression. I want to train as a piercist and I would love to have my own business which would include my unique idea of a Piercing Clinic.

The Piercing Clinic would be good because it would catch up with clients and give them a chance to discuss issues, check for infection and get advice on piercings and aftercare. As it is right now piercing aftercare is a pretty independent thing and no one really makes sure that people are alright after a piercing. It would also be a good place to discuss with a piercing technician and ask about what is essentially a kind of elective surgery. So many people go in to piercings without knowing what the risks are and there are even cases of people dying after piercings. I have always wanted to actively help prevent that from happening. By awareness and making sure people are asking the right questions prior to undertaking and the lack of regulation.

I would love to work with tattoo artists who could hire a station in my shop. I would want to be an active part of the body modification community. With help from Becky, Jace, Nat, Tom and all my other friends, this dream could be a reality. And I get to prove to myself and other people that just because of my disability and illnesses, that doesn't make me less of a worthwhile person capable of contributing to something I have been passionate about ever since I can remember.

Mine and Becky's tattoos are healed and they look incredible. They symbolise so much and even though they are only small, that doesn't make them any less poignant.

Loves
Wendy xx

Sunday, 11 March 2012

Bright and Smiley...

I guess recently I have been smiling a lot more. I have had some amazing things happen over the last few months, since me and Tom split up (I know now why and in a way I am glad I still have my amazing friend) I have had to learn to deal with painful infections and trips to hospital on my own and it has made me feel stronger for it. I've met someone new and we are getting close. I have a wonderful adoptive sister who reminds me so much as me when I was that age.

I also think back to how I was when I was 16. When I left home, I was such a naive kid. I never really understood what life meant and I thought the worst thing ever was not having money to go out, how wrong I was. I have to say that developing my asthma as bad as I did, I learned a hell of a lot. I learned perspective and I learned how to understand others. My natural empathy towards others means that I make friends easily and the ones I make, I tend to keep. I have learned a lot of things about myself and other people and I have had to take a lot on board, but you know something, although I grew up in Stafford, I think I matured and became an adult here in Redditch.

In the next weeks Becky is embarking on her own path and coming up here to live with me. She is going to be my live-in carer and will be able to help me with a lot of things which I openly admit were problematic because of my conditions. For her, the main thing this will give is an amazing life experience. Learning about how to look after me and what my conditions entail. It is also a big responsibility and I really am very grateful towards her for making the offer to do this with me. The only way I can truly thank her is to ensure that her biggest dreams become reality. I owe her that much as she is selflessly dedicating her time in this way.

I have a few things coming up in the next few weeks that are exciting, including finally getting to meet and go on a date with someone who I have been talking to for a while now and have gotten really close to. His name is Jace and we are going to the Birmingham Kitacon 2012. To get tickets to this event will set you back nearly £50 (for the three days) and we both had to go on the waiting list to get accepted. We got accepted yesterday and now we're both planning to go, in costume to the event. Its going to be a LOT of fun and the costume me and Jace are planning well, we're going to be a combination.

But more on that later!

Loves
Wendy xx

When I turned 16, I thought I knew what life was all about.

Monday, 5 March 2012

Walk a Mile...

This goes out to anyone who makes judgements on people with "Invisible Conditions" calling us lazy, freeloading or accusing us of faking the conditions we have to live with. It makes me sad that there are people out there who can run their mouths and not actually find out what these conditions mean to those of us who suffer them. Then theres the people who play the "I'm "Iller" than you" game, thinking that long term, chronic conditions are either a contest or a trump card. People like that make me feel physically sick. It's not a contest to see who is more unwell than anyone else.

It is not a bloody competition to see who is more unwell.

And to those of you who think maybe I am a freeloader or any other hateful jibberish, then let me invite you to live 1 day in my life. 1 day of having to take care of my medications or having to fit breathing treatments in to the day when you would much rather be out there living life with your friends. If you think it is so easy then I would really invite you to try it for one day, THEN you can say whatever you want about my conditions.

Loves
Wendy xx

Independent...

I always said, even when I was unaware just how much my life was going to change, that I would always want to be as independent as I can and I wouldn't want to live through other people, nor have them live through me. There are times when I wonder if that is what I have achieved or even days when I wonder whether it is even possible anymore. Then I shake myself down, dust myself off and get up again. I get moving and carry on walking. I have a good pair of legs here, I should get up and use them.

I watch a lot of documentaries, in particular one called "Big Body Squad" and it really does make me think. These people are miserable creatures and their lives are so unfair on them. Some of these people are subject to ridicule and taunting and they become so afraid of leaving their homes. Some of these problems are not their fault, but it does make me wonder how someone can allow that to happen to them. But maybe as I have never been in that situation, I can't really comprehend how they feel. There should be more assistance for people who want to improve their lives, rather than ridicule and cruelty.

I think sometimes about the struggle it was to get a personal budget for my care. We had to jump through so many hoops to get everything I needed, now we're all sorted and I have a sustainable home with people regularly coming to help, it makes all the difference. I go out more. I smile and laugh more. I draw, and I like what I draw. I have quality of life again and I feel less like an invalid these days. I go out some days and I end up smiling about small things. I think it becomes all too easy to lock myself away and hide because of fear of what others say or do. But what you have to consider is that people who go out of their way to make you feel miserable only do it because they feel insecure about their own lives.

I know it sounds cliche, but I made my life to what it is now. Sometimes its not easy and I do feel the effects of my asthma, but other times I try and stay as positive as I can, even on those days when I feel exhausted or my lungs give me hell. I mean something to some people. I actually care about myself again. It seems so farfetched considering where I was less than a year ago, but a life I thought was all but over now is blossoming and theres hope. Theres a future for me. And I am so lucky to have people around me who I care about and care about me. It's for those that I will continue to grow, mature and become the person I used to be, except older, wiser and stronger.

Loves
Wendy xx

Thursday, 1 March 2012

Moments of Calm...

After recent events and other things trying to distract my attention and draw me away, I had almost forgotten to allow myself time to recuperate, I wound up sleeping most of the last 2 days. It was probably the best defense for me to recover from things that trouble my body. I think that sometimes when my body goes out of the way to make me feel like someone has run me over with some kind of tractor.

Sadly such is the life of someone with T1BA. No matter how hard we try and stay on top of things, take all the breathing treatments, get plenty of downtime and make sure we do everything we need to, it still comes and hits hard between the eyes. That is just the reality of it. That is something I have had to accept, even when I would rather fight with myself. This doesn't make me strong, it just makes me real. Some days there are times when all I want to do is cry for a bit, or theres other days where I smile and know that no matter how bad things get, I'm not alone. The people in my life give me something to smile over... Then I remember that I give them the same thing.

When Becky last stayed over here, she gave me a present. Well she gave me loads of presents, but this one was so poignant. It was a fridge magnet that had some meerkats on (I love meerkats! I read a book about the mob of them from Meerkat Manor and I smiled all the way through). It also had one of the most amazing messages that anyone had ever given me, I actually had tears in my eyes when I read it. "Some days our friendship is the glue that holds me together". That magnet lives on the boiler in my bedroom and it reminds me that even when I feel like no one is there, there is always someone who is maybe just a text or a tweet away, or even a message on Facebook.

I'm thankful, and I feel like I have landed on my feet finally rather than fumbling in the dark. At home it is just me and 5 guinea pigs (sadly Lightning passed away, I miss her, but in some ways I know it is for the best that she isn't here anymore). I do like that because we all sit together and theres cuddles a plenty. I cleaned them out today which I find can be fun, they love to play around on the floor and they're entertaining when they popcorn about. Kadaj has grown so affectionate towards me, always there for cuddles and someone to talk to, along with Gizmo (who is a favourite with my carers), Zell (Becky's guinea), Gaara and Tenzou. They make a house a home.

I do like a routine, but I do also enjoy some spontaneity. I love to walk around town with my carer and get some fresh air. Theres a lot of wonderful things to do in the day and to get out of the flat can be refreshing, there are only so many days a person can stay indoors before the walls feel like they're closing in. It's been a big step to conquering my Agoraphobia. I can walk around the shops now and not have a panic attack, this is a good change for me.

All I need to do now is improve my asthma symptoms, we did decide that maybe the Bambuterol wasn't doing anything but increasing my heart rate and making me irritable. So I stopped that this week, my symptoms are pretty much as they were so we know that it didn't work... I tried reducing my aminophylline tablets, but that didn't go as well. Right now I want to whittle down what isn't working for me and hopefully reducing my symptoms. What I would love to do is get my 3 pages of repeat prescription down to just 2. Things I would like to bring down to the minimum are my quetiapine (antipsychotic) and my prednisolone. I can't ditch them completely, but lowest doses possible would make my body a happier one.

Loves
Wendy xx

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