Finding Your Track

Earlier this week, I saw something about a process that everyone who becomes chronically ill (or a "spoonie") goes through to some extent. It isn't like we wake up at one point of our lives and say "Hey, you know what, I want a chronic, long term illness that will cause me pain and generally whittle me down." and it's even harder when all you want is to get better but you can't. When people say to me "oh, well I have asthma and.... [insert some patronising comment here]. I can still do things and I don't need the stuff you do." it is extremely annoying. My asthma isn't like "normal" asthma. Brittle asthma is a completely different beast and a harder thing to work through and get through. I don't use a wheelchair because I gave up. I don't have help from carers because I'm lazy. I don't have oxygen because I want to have it. These things have been a necessary part of my life for some time and I know what they are and why they are the way they are.

Something that I was thinking about recently was the process you go through when you realise that you're not going to get better from an illness. Its like you go through a grief period of sorts, as if you're grieving for the person you used to be and the person you wish you could go back to. Its hard to understand sometimes but even for the person going through it, it isn't easy. Heck, before all this, I was a totally different person and I lived a totally different lifestyle. I was at college, looking for a job and I had a small bedsit in a really old shared house. I loved it. Waking up in the morning, crawling over to my kettle and making tea before sitting on the arm of the sofa watching the sun come up through the woods. I would then dress and walk down the hill to the college bus and go to class.

After class, I would go home (via Waterstones usually to get a book which I would read as I walked home), fix up something quick and easy for dinner and then eat it in my room while watching TV, talking to friends and working on assignments until I was tired and went to bed. It was a simple life I lived and I was comfortable and lived the way I wanted to. I don't think that I ever stopped for one moment and thought to myself "enjoy this while it lasts because soon you are going to lose everything." and I never once thought that one thing could turn my whole entire life upside down the way it did. I do wish I could go to my "old self" and tell that girl to enjoy her life. Don't get involved with a certain person and keep pushing yourself forwards, get your HND and live the dreams you clung to for so many years.

Although I guess on the other side of it, being in this situation has taught me a lot. Before it, I worried too much about things that didn't really matter too much and often missed the point of things. Sometimes you need to really have something that makes you take the leap back and look at the bigger picture. I had fun when I could and I enjoyed the end of my teens and my early 20s as much as I could and I have great memories and no regrets. Now in my mid 20s, things are so different and I think on some level, it has made me different because it has made me grow up. Instead of running away and hiding from my issues, I have had to face them, whether it was alone or with help. Because I have experienced that feeling of not knowing where to turn to when the world seems to be coming apart around me and I know who to ask for help and I have helped others to do the same. Maybe in some ways, going through the things I have has made me a better person? It certainly showed me that there really isn't anything wrong with asking for help. Asking for help has meant that I am in a better place and things are going to get better. I just have to sit tight now and let the processes run through.

One of the good things that came from all the stuff with my neighbour is that they allocated a Home Support Worker for me. What started out as a way to get me through this whole thing has become something so much more. I have someone to talk to when things are difficult and I need to just get it off my chest (metaphorically speaking) and it does help. Having that support will help me clear a lot of the things that have been bothering me and getting things back on track. Or on a better track and I will have a better quality of life as a result. I think that is my priority now.

When I say quality of life, I don't just mean healthwise. I mean in every other aspect that affects my physical and mental well-being and I have been reaching out to the right people to get the right kind of help. Whether it's a bit of help with my shopping or a bit of support with going to see medical professionals. There is always someone on hand to help and I am blessed really because it has made what could be (and often is) a really isolating and daunting experience much easier to cope and survive with. And for days where all I really need is a nuzzle and affection, of course I have my furry friends who are always around to make me feel less crappy.

I have struck quite a bond with my Kaiba. Out of the guinea pigs, he is the calmer one and he has such a lovely personality. He's the one who wheeks and climbs the cage to say "Hello" when I sit on the chair in the living room. And waits for me put my hand in to give it nuzzles and licks. Yugi is a friendly guinea pig but hes at that hyper age where all he wants to do is run around and play. I don't mind of course because it is so funny to watch and when he does come to see me, hes very cute and sweet. Kaiba is a momma's boy though and loves to be stroked and cuddled. His long fluffy hair makes him so soft as well to cuddle, although when he goes to sleep its a case of "the mop has plopped!" Hes a Peruvian/Abyssinian crossbreed so he has the long soft hair of a Peruvian and the spiky and crazy style of an Abyssinian, cute blue eyes and a lot of character. They both have a lot of personality and I sat for ages the other day watching them playing and running around. Yugi will calm down as he grows up so I just interact when he wants to rather than forcing him.

So, things are on the up and will continue to get better!

Loves
Wendy xx 

Mobility

I realised something today. It has been 3 years now since I had to take the plunge and start using a mobility aid to get around. It wasn't an easy choice I had to make and it was one that took a lot of soul searching, doctors pestering and other things to make me do. They tried to have me in a chair back when I was at the YMCA but it was due to my own stubborn nature (and the fact that I didn't want to appear weak to some people) that made me refuse and I kept on my own two feet (often with support from another person/crutches) for as long as I could. I think I finally accepted it when I was with Becky in town and I remember she was nipping up to one of the shops and I had been exhausted by the time we reached "the palm trees" area. I had to sit for 10 minutes while nebbing in the middle of town and then struggle on to Tesco (where Becky told me to get a scooter or go home). She made sure I was safe obviously and when we got to Tesco she helped me get around the store and get the shopping done.

It was after that trip and a long talk to the doctor that we decided that it was probably the best way forward for me now. My back was constantly aching with my leg going numb (resulting in falls). My knees ground and crunched as I walked and I generally was not in the best state of health. I started only going out when I could and that was becoming fewer and further between. I felt so isolated and like I was trapped within the boundaries of my home. I think it made me feel more and more depressed as I was soon at the stage where even getting from one room to the next would be difficult. I have had my old "Scoots" for 3 years and it still works, as long as you're mindful of one of the cables and when I haven't got my chair, its a good substitute. Even if whenever I used to use it, I would get some people coming out with some of the worst judgmental tripe you could imagine.

Back when I was using the scooter, I suppose you could say that my disabilities were mostly invisible, unless of course you knew me and knew what I was hiding behind my smile. This was before I started with home oxygen and I probably looked like a normal 20 something but I used the scooter to get around. While a lot of people were polite and never batted an eyelid, there were some people out there who would come out with some of the most horrible things. One particular occasion happened when I was on a bus (because the small scooters ARE allowed on buses as long as you can turn a full circle with them) with Becky. We had just finished our morning errands and were headed home to unwind and this old lady got on the bus. She snorted rudely before sitting a few seats behind us (I was in the wheelchair bay, Becky was in the seat opposite) "I'm 84 and I don't need one of those...". Becky didn't stand for it and rather politely (especially when you consider the situation) told the woman to mind her own business and stop being so nasty. Just because she didn't need one at 84, didn't mean that I didn't at 25.

There is a stigma about people and mobility scooters (particularly us youngsters). I think its because there are people who think that if you are younger than a certain age then you shouldn't need to use one. My mobility scooter changed my life as it allowed me to leave the house again with confidence that I wasn't going to struggle to breathe the entire time and my back wouldn't give way and become painful. It was motorised which meant that I could even start venturing out on my own again. Yes there were people who said nasty things (and people who gawked at me) but that didn't bother me. Heck it still doesn't bother me when I go out in my chair. People will say things and they will be cruel about it but to be honest, you do have to thicken your skin a little and remember that you don't have to justify yourself to anyone. I use my wheelchair outside of the house. Not because I am lazy. Not because I want sympathy. I use my wheelchair outside because it, and my oxygen cylinders, has made my life as independent as it can be. Which is something very important to me.

I was scanning some news recently and people were contesting that the new "hoverboard" (the latest fad) is not allowed for use on public footpaths and some people said that the same should be said for mobility scooters. One person was saying how most of the people who use them are just fat and lazy. Personally, I think that things like mobility scooters should be subject to the same conditions of use as wheelchairs. I think that the person wanting a scooter should have to be assessed by an Occupational Therapist and assessed that they are mentally and physically competent to drive the scooter around, because there are a lot of older people who whiz around on the scooters and run in to everyone. In my case, I don't have that kind of issue, I just have people walk in to me because they were too busy playing on their phone (bit of a pet peeve) and not looking where they were going!

To the people who rely on their mobility aid, it is a lifeline and it is a vital way of getting out of the house when otherwise you wouldn't have been able to. I am proud to say that I am a wheelchair user.

Loves
Wendy xx

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.

Loves
Wendy xx