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.

I started this blog to tell my story, about who I am and what I do. I live with 2 mental health problems as well as a disabling and sometimes painful physical problem. 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:

I am young, caring and a very smiley. I have a lot of wonderful people in my life and these keep me going through the best and worst of times. 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. 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 went through hell due to bad diagnosis and poor clinical care, and I suffered a lot as a result. I do my blog to tell a story of hope and how a heart full of pain and sadness can find a beautiful light inside. I agreed with Cissnei in Crisis Core when she said that "Wings symbolise freedom for those who have none". I have always dreamed about having a pair of wings and being able to fly away from all of the things that hurt me in life. Sadly many times my wings were clipped or even pulled away and I was left with nothing.

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

Saturday, 28 November 2015

Being Home.

As my DLA is due to run out next year, I was asked to apply for PIP (Personal Independence Payment, basically the new DLA but harder to get and a different way of assessing it.) and I was actually kind of worried about if I was to be completely honest. Out of 10 people I know who have applied for this, only 3 of them got it and one person even took it as far as tribunal and got shot down (which I would have thought would have been a sure thing when they saw his condition for themselves) so obviously I approached the whole thing with caution. I hate doing the long, tedious forms that come with things like this. I know they're needed and we need to get them filled (even if it is just an exercise in getting a hand cramp) and to do so, getting someone who knows how PIP works and how to best explain the situation has helped me too.

It took me over a week to fill out as much as I could and then with my support worker, over 2 hours we filled in the blanks and made sure that everything was clear and there would be no ambiguity about the situation. My habit of trying to make light of my rather frustrating circumstances can sometimes work against me as I can give the impression that things aren't bothering me as much as they are. I think that has been a coping mechanism over the last few years to stop be from getting low or miserable about things. It's too easy to sink in to sadness when you feel like your whole body is just betraying you bit by bit so its hard to kind of explain that in a clear, objective way. I don't think I had really taken in the enormity of my conditions and what they do to my body. When you live with something every single day, those aches and pains become normal and being able to walk to the loo and back without having to rest between is a luxury not a given. We must have done really well though. I didn't have to have an assessment (which is where most people's claims fall apart) and I was awarded the enhanced rate for both components for an ongoing period. Basically I am on the highest bracket AND it won't run out like before. So next year when I renew my railcard I can get one that lasts longer.

It also means that I will carry on with Motability who supply me the lease on my wheelchair. My chair is being repaired at the moment which means that I can't go out (not that I should be with a case of bronchitis looming over my head) but it has been one of the biggest improvements of my quality of life. Admittedly it was hard at first to accept that I would need a chair to get around but as time passed and I got more used to the idea, and the new freedom it allows me, and now it, along with my oxygen, means that I can get out and about, live my life and do the things I want to do. Admittedly I have to plan things carefully (how long I'll be out, what meds do I need to take, do my nebuliser and conserver have enough battery?) but as long as there are people in regular contact and I don't do too much by myself, I am able to enjoy my freedom as well as my conditions allow for.

I do think it is hard to be in a relationship with someone like me though. There have been times when things have had to be cancelled and dates changed due to sickness and appointments. There have been times when I have had Jace down or I have been at his and I have been sickly. I think what makes me feel better is in knowing that even on one of my bad days and I can't get out of bed or do much, it's OK because we can just lie in bed and watch films on the laptop or fold out the bottom of the futon and I can rest there for a while. Not to worry, things with Jace are wonderful, its just that I wonder sometimes about the impact my illnesses have on him. Or anyone close to me for that matter. It can't be easy to see me when I get poorly and need to go to hospital or seeing me in a hospital bed and how often that can be, asthma isn't a pretty condition and it can leave you feeling physically and emotionally drained for days post attack. Obviously they willingly do everything they can to support me, from going to appointments with me to just coming to see how I'm doing every so often. I have carers who come in several times a day and they help me with everything I need help with so I can live as independently as possible. While I can live without having round the clock care, I am happy and I am grateful for everyone and everything. I

On my birthday, it was nice because my mum and her partner Dave came to see me and I even had a bunch of (artificial) flowers from the Chaplaincy and League of Friends (which cheered me right up, all purple with a sparkly butterfly!). It made what could have been a difficult day easier and I was reminded that I am loved by people and even on my bad days, I can keep going because there are people out there who are rooting for me.

Not to mention my fur-babies. When I was away, I missed my boys greatly and had to watch videos and look at photos (showing the staff who wanted to see too) to keep my spirits up. I have really bonded with Kaiba and he is such a sweet little fluffy thing, we call him "the mop" because when he flops down to sleep, he looks like a mop! He was the adoption centre pig so there were worries on his behaviour, unfounded mind you as he has been good with little Yugi (even if hyper little Yugi decides to run around and bounce on Kaiba) and even said hello today to Loki-bunny. My pets make me feel good about things and I don't know where I would be without them. Kaiba recently decided that he is interested in whatever food I have and an unguarded plate with some left over spinach and ricotta cannelloni was nibbled and licked up quickly (as well as him playing with the end of the spoon, rather cute to watch) and with some extra vit C in his diet, we have a perky and happy pig. Saying that, all my animals are happy and you can tell that they receive nothing but the love and affection they deserve. They are like my children, as due to physical problems, I was told at 17 that I would never have children.

I am glad to have been home for over a week now and I am slowly getting back on track with myself. I have a few appointments in December to do, including meeting my surgeon for my wisdom teeth. It's going to be a long and probably tiring month ahead of me but with Christmas coming and the hand made cards all nearly ready to post it's all coming together. All I need now is to get the final go ahead for something that I am not ready to shout out about yet (want to wait until its done and THEN make it public) but there are some changes coming up on the horizon and I for one am ready for them!

Wendy xx

Thursday, 19 November 2015

Dear Neighbour.

This is an open letter to my neighbour because of all the stress he put me though over the last months. Chances are, he won't read it and he'll probably be too arrogant to understand the concept of consequences for how he behaves. Maybe he felt like he had won some small minded battle? I don't know and I probably will never understand how selfish some people can be.

"Dear Neighbour.

As you may have been aware of, seeing as you watched and seemed amused by the ambulance that appeared in our close last Thursday, I have been in hospital for the last week. This week was supposed to be a celebration. Because of my health problems and deterioration over the last 18 months, every year I see a birthday is a blessing in itself. Birthdays should be spent with friends and family in happy places like a restaurant, pub or even at home and be something wonderful.

Due to the stress you put me under and the fact that you just couldn't or wouldn't allow me to rest because of your music and bullying actions (planting your bin in my garden and refusing to move despite being told to by the council, you honestly have no right to that garden and I hope that when you receive the plans this is clarified. THEN putting something in my grass which one of the guinea pigs ate, such a sweet, gentle creature suffered a rather horrific death) I had a life threatening asthma attack on Thursday night. I was rushed in through A&E and the staff fought for ages to stablise me. I was then taken to a ward to rest and recover, especially as I have a history of respiratory arrest and am in respiratory failure. I really wanted to be out of here by Wednesday.

I really wanted that. It would have been wonderful to not be in hospital for my birthday and it actually hurts me more that you know what you do is so cruel and wrong (so you can't claim diminished responsibility) and I really hope you get the gratification you seem to want, because why else would a 36 year old man take it upon himself to bully a young disabled woman? Please see this as a wake up call. You took this too far, all because you were asked to keep your music down.Stop being so selfish, it's bad enough that I am being driven from my home in to the cold on a near daily basis but now I am having to move, partially because of you, partially because there is a better accommodation for me after 5 years of living peacefully and quietly among the community and I feel like I'm being punished.

But don't worry. You are getting "yours" as well in due time."

Wendy Jordan.

Sunday, 1 November 2015

Halloween Fun!

Just lately I have really been in to my sewing. I have done counted cross stitch for a long time and it has been something I find I can really relax with. Maybe its the feeling of knowing that you are achieving something as you sew. Maybe its the fact that when I look at something as it grows and takes form and knowing that it will be something to enjoy. To quote Keats "A thing of beauty is a joy forever." I try and look for that in a lot of life because its in finding that beauty in something that makes it all the more worth doing. Even if its something small.

Last night was an example of just doing something to make someone smile. Halloween is a strange time of year because so many people are so grumpy about it (even though we were kids once too) and I wanted too do something positive and kind to the local kids. I sat and carved a pumpkin which I placed an LED light in (so that I wouldn't risk anything with candles and oxygen as they don't go together very well) and set it up in the window with 2 glitter skeletons and waited patiently for the kids to come and knock for treats. It was all in the name of fun really and to just do something kind for the kids. It's the first time in a couple of years where I have actually been up to doing something for the "trick or treaters" and I will admit it was tiring but it was worth it. I definitely felt good for taking part.

So I got a simple "costume" (well actually it was an Optimus Prime front shirt (with blue pj bottoms) and my voice changer helmet) and when the kids knocked on the door, I handed them out some sweets. I think my favourite moment was when a little boy came to the door and I knelt and made my helmet talk. Seeing the little lad smile when it said "I am Optimus Prime" was probably the most awesome thing ever. I had made that kid's night! He smiled and said "You're a Transformer!!" and I had to laugh, his mum looked so grateful that I had at least made the effort but its something that will stay with me for the reason that I had a lot of fun and I did something different. Besides, who wants to be that grumpy sod in the neighbourhood that just yells at the kids and doesn't do anything positive?

I like that the local kids know me as the "guinea pig lady" and they love coming to see my small furry friends. It's a shame that they didn't spend as much time outside this year, partially due to weather and partly because of problems with my upstairs neighbour and I didn't want to leave vulnerable animals outside in the yard unattended where anything could have happened. It's common sense really. When the animals are out though, I have no qualms in letting the kids stroke them and telling them about what guinea pigs are and what they like to eat and do. It surprises me that some children have never seen a guinea pig up close, but then again, I have lived closely with them for 7 years now and I love them as much as I always have. Whenever I need a perk up, I just look through my plethora of pictures and videos of guinea pigs past and present and it always makes me feel better, particularly a video of Kaiba and Yugi playing with a ball of paper. Kaiba loves his paper and his fluffy chops just make him a huge character around the flat!

Now comes the rush to finish my Christmas cards and get them sent out. I have sewn some to start with but decided to take a break for a couple of days from it otherwise the metallic threads would probably destroy my fingers! They will be sent out on the first of December, so I have 30 days of stitching to do. I can do this easily and its going to be nice to send these cards out when they are done. It works because now is the time of year for cosy nights in and spending hours with my needle and threads.

Wendy xx

Thursday, 29 October 2015

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!

Wendy xx 

Wednesday, 14 October 2015


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.

Wendy xx

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

Saturday, 5 September 2015

Don't Judge What You Can't Understand.

Getting used to my little fur-babies and finishing up on what has been a huge clear out (I didn't even know I had that much junk lying around but you know how it goes, put it in a box or a drawer and it gets left and forgotten about). I think I pushed myself a little too far and I am paying the price for it as usual. I'm still getting to know this body and what it means for me, the limitations I have to work around and there are always going to be limits. Anyone who could say "Well, it's -ONLY- asthma...." is obviously an ignoramus and doesn't understand exactly what it is like to be in my body. Knowing that I am not on my last legs is great but it doesn't make things any easier to struggle with. Would you tell someone who was missing a limb that "well, it's -ONLY- an amputation" or "it's -ONLY- cancer..." so why would you say the same with asthma? You shouldn't judge what you have no real comprehension of understanding, unless you have been there you have NO right and NO idea.

Please remember ASTHMA CAN AND DOES KILL PEOPLE. I have nearly died from asthma attacks on many occasions and I know how much of a knife edge it can be. People are so ignorant towards asthma because its been stereotyped as the illness that the "geek" kids or fat kids get. Its become a rather big joke actually and when it comes to a serious attack, no one knows what to do. Asthma isn't a joke. It is a real condition and to some of us, it is disabling. It is exhausting. It is painful. So please, next time you decide to make a judgement on someone's conditions, try and remember that it probably feels much different to how it looks. The best way to describe brittle asthma is, how a normal asthmatic feels during an attack is how a brittle asthmatic feels all the time.

The drop in lung function to under 40% has been one of the biggest game changers for me. This has only dropped in the last year or two and on my bad days, I struggle to get over 25%. This means that have on average about 1/3 of working lung and that only works to half its efficiency. So be patient with me if I can't walk too far, I don't choose not to, I just can't. Please try and understand that it takes me nearly 4 times the effort to do something that it would take someone else. Even getting up and getting dressed is exhausting sometimes and I even have days where I have got dressed and wanted to curl up and sleep. I have carers to help me, not because I don't want to do things, but so that things can be done safely and you can ask them, and I am sure they would tell you happily, I do try and do as much as I can every day. It isn't unusual to have them come in to find me flopped over in my bedroom or even on the living room floor because I have pushed myself further than I ought. I am not giving in or just sinking in to lazy habits at all.

Actually its the complete opposite. I am making steps towards making my move to Blackpool. I have a support worker and a housing officer who are working tirelessly to help me get there. It is a long process and it will take time, but every step is a step towards it. I'm getting letters from my doctors to support my reasoning and rationale (because if it was as easy as saying "hey, lets move to Blackpool" then I think a lot of people would do it in a heartbeat). But it does take time. My support worker, an ex nurse, has been chosen specifically to help with all of this and help me wade my way through it. She will be able to call upon her own knowledge and experience to say what my physical needs are and what I will need in a place. What adaptations will be put in and what help and benefits will be needed. Luckily for me, Jace has said he will look after me but we will look to see if any other support is needed as well. Some people think that getting carers in and support staff  means that someone will do everything for you and they eventually behave as such. They then give up and stop doing anything for themselves and are convinced that its because they're elderly or infirm.

That in itself is a bit of a vicious circle. Feel ill, don't do much, still feel ill, do even less, until you're bedbound and can't (or in a lot of cases, won't) even try and do things anymore. I am fighting my ass off to avoid getting to that stage because I don't feel that its a good way to go. Maybe its because I was raised to look after myself, but I can't sit around idle for long otherwise the depression starts and I get more and more frustrated as time goes on. Maybe that feeling has been whats pushed me to go beyond my limits and is now the reason that even as I am typing this, my whole body is hurting. There is blood on my pillows and the top of my duvet (from coughing I think) and I am struggling with my chest today.

It hasn't helped that a certain person drove me from my flat again with their music (this is getting really old now and I am fed up of not being allowed to relax in my own home) and I spent a couple of hours in town which was rammed, not great when you feel like crap and want to be alone to sleep. The good thing is that I have the right people on my side and they have witnessed what the situation really is, things are in the pipelines but I won't let anything slip yet just in case (because last time, he just turned it down while the investigation was being done, kind of obvious when you look at it). I wonder if this person actually understands the level of stress he is putting me under and whether or not he gets some kind of gratification in knowing that he is essentially bullying someone who can't fight back, then again, there are people out there who need to do things like that to feel "big" or "tough" and that in itself is pretty pathetic if you ask me.

As for me right now, I think I am going to watch some more stuff on my laptop, rest as much as I can and do a bit more sewing as long as the elephant stays off my chest of course!

Wendy xx


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