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, 1 October 2015

Piece by Piece

Maybe the reason I haven't blogged for a couple of weeks is that I have been looking for too many answers before I could do so. Its no secret that there have been times recently where I have been struggling to make sense of things going on around me, people and situations that have left me wondering why they are the way they are. We all have those times when even someone with the most optimistic outlook can wind up breaking down, struggling to believe that there is a way forward and I would be lying myself if I said that I never experienced it. My arms and legs are covered in scars that remind me every day that I struggled with stuff and it really got to me sometimes. These aren't reminders of wanting to die though (even if there have been times of genuine wanting for that) they are a reminder that even through the bleak and bad times, there was still a bit of light out there and no matter how much I tried, I couldn't let myself just give up and this is where asking for help became important.

I think that there has always been a part of me that has always looked for inspiration and solace that a fictional character can bring. I think my Sephiroth obsession started when I was younger and I needed a heroic figure to give me that nudge to move forward (and I was gutted when I realised that he was never a full playable character in the PS1 game) and even though he lost himself, there was always the possibility that would be that he could find himself. Just as I have had to do. Sometimes just having a friend to talk to or give you a hug and tell you it's alright is all you need. Sometimes it is the comfort of love and affection from a cherished pet. Or even the feel and smell of something familiar and beloved (like a blanket or soft toy) that can calm the sadness inside. I have a doll. He's called Sephy (based on Sephiroth from FF7) and he has been there for me through some of the scariest admissions (often cuddled close to me in resus or held tightly as I sleep), painful experiences and some of the toughest things I have ever faced. He was given as a housewarming gift many years ago when I first moved out to my own place and has been my companion for nearer to 7 years. He has been there from when my asthma started getting this bad and every bad time between. Right now, as I sit cross legged on my bed, near a cup of tea (in a Sephiroth mug, surrounded by Sephiroth things (my first ever model, mini models, a fan, candle and perfume)) he is sat watching me as he rests against some cushions (2 match my bedspread and 1 is a tape cassette) next to my nebuliser.

That is how I cope.

I think that a couple of weeks ago, I was lucky that my carer came in when she did. I felt so frustrated because I was tired (from having not slept), in pain (from a really bad infection) and generally feeling miserable. At this point, my neighbour had knowingly been torturing me with his music for days and even well in to the night at some points and he knew how much it was making me feel miserable. I don't get out as much as most and going out often means a lot of planning as I have to take the right amount of stuff with me, carrying inhalers, nebs and o2 everywhere as well as maintaining the right amount of pain relief with limited drowsiness. To be driven out by the "bumbumbumbumbum" of dance music (the bass of which rattles the walls, pictures and has even caused things to fall off shelves) and his sly nature (turning it down as soon as he caught a hint of the council sniffing around, to gather evidence, we had to be a bit sneaky this time around) meant that I felt as though I was stuck in this situation without any end or way out.

After a string of nights where I was only having 2-4 hours of sleep, I was physically exhausted. Emotionally unable to think straight. I think I just wanted out after that point. My eyes wouldn't focus, my head was pounding and I felt sick and unable to catch my breath. I warn you now, this is probably the most distressing thing I have had to write about but I feel that it is important for healing and so that I can show that there are ways to cope. I had been gathering as much of my meds as possible, being on opiate based pain meds and benzodiazapines means that I have access to a sizable amount of things as such in my home. I wanted to just take the lot and go to sleep. I had said vague goodbyes to the people I cared for and I had put some of my favourite songs on. I was ready. It was when the carer came in, held me as I sobbed and soothed me and called out for help from the police, social services and the medical services.

That night was spent with people coming in and out and they were close to sectioning me so that I could get some rest (luckily we decided that it wouldn't have to come to that) and get this infection under control. I had a visit with the police when it was still going on at 2 in the morning and they told him to stop it. All I could think about was how selfish I was being and how ashamed of myself I was. I was willing to let my friends and family go through pain just so that I could be away from what I felt was a huge thing. I don't feel that way anymore and I have no intentions of causing myself harm as I feel that now this has happened that things are getting done about the bleak situation. Admittedly the doctor on the Monday didn't help by prescribing the wrong treatment for the condition I have ("a little bit of thrush" is OK when its in the mouth or down belows, but in the lungs it is something COMPLETELY different) and the "relaxation techniques" fact sheet (sadly there was no "Bludgeon the person making you feel like this with the hardest object you have to hand" part so it really was no help) which was put through my shredder.

I do wonder if that person realises how selfish he is being by making that kind of noise and not caring that the was making someone else feel so depressed that they were willing to take their own life? Then again, I would hate to be nearly 40 and having to pick on a disabled girl in her 20s just to make me feel like a big tough guy. This person tried to destroy me and make me feel scared and driven away from my home. Instead, it has only served to prove my own sense of solidarity and strength as well as reminding me that even when things look at their worst, there are people out there who I can talk to.

This now leads me to the focus of this post. I have been approached by a gentleman who would like me to share the link to a helpful website. The Counselling Directory UK is a resource for people who are looking for someone to listen during a tough time or looking for help for someone they care about. I will be setting a link to the website via my little side panel as well so that anyone who needs it can find the link to this wonderful resource.

Wendy xx


  1. Hello! I can relate to this so much. As I read this I'm using my nebulizer and laying in bed with all the items I use to cope. I really hope the situation is better and that your neighbor GROWS UP!!

    1. He seems to think it is his right to make as much noise as he wants which isn't fair or how to behave in a community. I have been gathering evidence (funny thing is when he knows I'm doing it, it goes very quiet, nice try but unfortunately it doesn't get rid of the recordings already made). Don't worry, Karma will get him eventually.

      I really hope you feel better soon and that your own coping mechanisms work well. And thank you so much for your support and kind words. We aren't alone, and we all have to look out for one another.



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