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, 16 January 2016

Getting Unpacked.

I can't believe how much better things are for me here in my new home. Its so quiet and secluded so I don't get any noisy people around (even with a pub over the road) which has made such a positive impact on my mental health. I never realised before (maybe it was because I never had time to sit back and reflect) but I think my old place was just becoming a cage for my depression and I was struggling to get free of it. I am free of it now and I couldn't be happier. Admittedly there is still a lot of work but its my home now. And the best part is, where I am is so secluded and out of the way that if I don't want anyone in particular knowing where I am, they won't ever find out. In a way this has been a chance to cut ties to the past and things that were getting me down. Its not running away, its finding something that works better and makes you feel less negative about the past.

Moving has been a huge change for me. Change is scary sometimes and when you are wired the way I am, it can be scary. Maybe I was desperately clinging on to the old place like some kind of comfort thing and never realised that really it was becoming a rut and I was just getting more and more miserable as a result. The problem is there is that you start feeling like nothing is ever going to get better or there's no reason to fight anymore. It's not the healthiest way of looking at it and I think that if you can't even manage to get up and make a cup of tea in your home let alone anything else, then your home isn't a home anymore. As hard as the move was, and as stressful, it has been worth it. It has empowered me. It has allowed me to say "Well, that was then this is now." My new neighbours have helped me in more ways than I could even say and I feel like part of the community here unlike back in Abbeydale where it was becoming cliquey and there was a strong "us vs them" attitude.

I think the hardest part of moving is in the unpacking. I literally had days to move (which when you're in a wheelchair and not really able to move about as much is even more hectic) and it was a completely crazy experience. I think I spent my first few days here wandering back and forth thinking "where do I even start?!" with all boxes, bags and who knows what else. Talk about overwhelming! Gradually though, I have found my pace and I feel so calm. I feel so much less stressed and I really do like the peace and quiet. My lovely new neighbours have helped me so much over the whole thing and I couldn't be more grateful to them. It makes such a difference to have nice, helpful neighbours!

One of the things I decided when I moved (admittedly down to someone giving me a "push") was that I wasn't going to go on the "it'll do" idea for furniture. I have gotten rid of the tattiest stuff and am replacing a lot with nice new stuff which looks so much better and cleaner and it is shaping up to look like the home I want, rather than the typical "benefit squat" that so many people feel that they have to have because they convince themselves that it's the best they can do. I may be on benefits but I get enough to ensure that I have at least got myself a comfortable, clean home which is all I ever really wanted. Looking around, I haven't done at all badly and considering my conditions and how they affect me, I am getting it together (with help) and the place looks and feels incredible. Of course I haven't said much about the area I live in for privacy reasons (because to be honest, its not really anyone's business unless I choose for them to know).

I am still in the process of getting unpacked. Its harder to do things like unpacking and building furniture when you are breathless or in a wheelchair but once it's done, it'll be set. I think in some ways, I had all but given up when I was in the old place because the more I did, the more things seemed to pile up. It looked like a squat towards the end and it felt that way too and I needed to get away from the negative feeling of the place and the fact that the place just didn't suit me anymore. When I moved in to the old place, I was a lot more mobile and able to do things. My knees and back didn't hurt all the time and I wasn't in the chair. It suited me then and for 5 years it was a pretty cool little place. But I don't know, maybe it was the old "temporary" things that lasted way longer than they should have while others were replaced more readily or the fact that it was so small and clustered in a block that it just didn't seem to be very comfy towards the end of my time there. Not to mention the problems with damp and mold which never ever got solved. Turns out it's a problem a lot of the old flats in Abbeydale have. They're just lumped on top of each other and you're always too close to the neighbours because they're there. Above your head.

I won't live in a flat again. Not now that I have such a wonderful place.

Loves
Wendy xx

Thursday, 7 January 2016

New Start. Definitely a New Start.

Have you ever noticed how people only accept sickness from certain types of people? The small sickly child who no one questions about having cancer or the people who make the diseases look like they're fashionable. Kylie Jenner in a wheelchair, the shoot that offended a lot of us. Because people would have seen her in the chair and how glamorous that looked and completely brush off those of us who use wheelchairs for real. Wheelchairs are not a fashion statement. I have been in a wheelchair properly now for 2 years. The hardest thing about going from "normality" to life on wheels was the level of denial I had. I didn't want to accept that now I would need a wheelchair to get around and even the simple stuff leaves me tired and breathless. It isn't ideal and sometimes I find it rather annoying because I can't do things like I used to. At first I kind of felt like I had been robbed of my independence and then as I got myself used to it, I realised that actually the wheelchair means that I have more independence than I have had in years. But with everything that happened when I was little and what we know now, I think I managed well to stay mobile for 26 years and maybe it was for the best that I accepted the help being offered and stopped struggling for the sake of my pride.

Being able to help another person in a similar position as I was in a few years back has been one of the things that has really made a difference. And after all the help they gave to me while moving, it was the least I could do really. Since getting my powered wheelchair my life has been so much happier and then getting oxygen as well has made all the difference in the world. Funnily enough, with the oxygen, I find that I am a lot more lucid and feel less like I have crawled out of a pit backwards. Its been with those and the love and support from friends and family that I have been able to get my independence back from what it was. And it was because of that that I realised my old flat just wasn't right for me anymore.

Don't get me wrong, I did like my old flat and after 5 years it had been made a home. But I don't think I ever made it a permanent home for myself. The place was damp and mouldy, I couldn't get in and out of the kitchen and couldn't prepare my own food or drink. The living room was narrow and always felt cluttered. And I won't even begin when it comes to the game we had with the bathroom! I never really liked the area and never really felt safe or happy there. It's hard to explain but Abbeydale is a bit of a difficult area to live in. I have been in my bungalow for 3 weeks now and I really like it here. It's so much different here that it is like being in a whole other town! I won't say where it is for privacy's sake but my friends know where to find me so thats OK and the people I don't want knowing will never find out because they have no reason to.

I'm still in the process of unpacking which is a bigger job than I ever thought of. I am getting it done gradually and I am setting up my home to be exactly as I like it. I haven't blogged due to being so busy but its a new year and a really good new start for me as well.

Loves
Wendy xx

Sunday, 13 December 2015

Moving on...

So I am beginning the process of moving on from my home in Abbeydale to a small bungalow on the other side of town. Basically, the main reason this is happening is that my place now currently doesn't fit my ever growing and ever changing needs and it's no longer safe or practical for me to live here anymore. My new place is lovely, out of the way and in a really quiet area where I am unlikely to run in to any issues (not having anyone upstairs will be a huge part of that, its not easy to have people living on top of each other and it causes more friction than anything else) that I have had here. Don't get me wrong, I have loved this flat and it has been my home for nearly 5 years and it does kind of suck to move on but I'm just looking towards the future. There are things I will miss in Abbeydale (mainly some of the people here were quite lovely) and things I won't (like the acrid stink of weed in the air which seems to linger throughout the estate).

My new place is a lovely little bungalow, one bedroom (with cool sliding doors between the bed and living rooms so that I can almost live open plan), a small room which will be the animal room, kitchen, hall and wet-room. This means that I can be a lot more independent and able to take care of my own needs a bit easier. This is fantastic because I won't rely just on carers, although they are a fab bunch, and I will be able to live my life in a way that suits me better. Obviously with moving comes a lot of work and stress but its all going to become a part of that "greater good" that I have been working hard towards. I want a better life for myself. I want a better future with people (and of course my animals, without whom I would be empty) who I care about and I want to be able to cast off the past and get on with my life.

The past is the past. Get over it and move on. Don't wallow in the misery and become a martyr to it then complain when suddenly you find yourself completely alienated and alone. I've moved on from a lot over the last few years and the whole thing didn't kill me. It made me stronger. I learned that I must value my own self as well as putting the other people's needs (not wants) first and that in trying to be kind, I put myself in situations that I really didn't want to be in. The key to moving on is to know that even though you made a few errors, you aren't a bad person. You are entitled to be happy. And no one ever has the right to make you feel otherwise because they want to stay anchored to one thing in the past.

I have enjoyed the nearly 5 years I lived in this flat. Theres been laughter, love, friendship and a sense of belonging here. There have been great times and times when things seemed to be harder to work around but the main thing is that I never let things get too bad. I think that a new year and a new start will be fantastic for me and it may even help me with my health. Being in a quieter part of town and in a place that's easier to access may be the best thing for me. I'm not for one moment suggesting that I will be perfectly well and not on oxygen or in a wheelchair but maybe these good days which I hear so much about may come to pass more often and hopefully when I have done my week of assessments, tests and trials at Heartlands (we don't know when that will be yet), there could be light at the end of the tunnel and hope that things are going to move on and get better.

We just need to hope and keep a bit of a positive look forward to the future and if we do, we will get there. Just got to keep pushing now.

Loves
Wendy xx

Wednesday, 9 December 2015

New Start?

One of the ways that I keep myself busy (because keeping busy can really help keep depression at bay) is by doing handicrafts. There's something about making things with my hands, a needle and thread that makes me feel a sense of "Yeah. I did that and I am so proud right now." and the most enjoyable thing I have ever found was my cross-stitching. I have been a cross-stitcher for over 10 years and I still have the first ever thing I ever cross-stitched. I did this back in high school with the guidance of my friend George's mum and she helped me get in to and enjoy the process. I remember drawing it on a piece of squared paper and then working on the sewing for hours. To still have this reminds me of the fact that I have been doing this for so long and when I look at it now compared to some of the more recent projects, its kind of like "Wow... I have come a long way on this."

My most recent project has been really fun. I have wanted to cross stitch a Sephiroth image for a long time and I did try once upon a time (but I couldn't finish it due to stuff in the background) and I lost heart for a while I think. Then I found a piece of software called "CStitch 9" which means that I can convert any picture in to a pattern for my cross stitching pleasure. Theres going to be over 13,000 individual stitches worked by hand. I am proud of my work so far, this was my progress a few days ago, I have since worked more on the collar, hair and am working on the chest today. I work on it whenever I get some time spare (which is something I seem to have in spades and when the piece is finished, I want to put all the pictures taken of the progress all in one picture so I can see how it grew and have it compared to the original Nomura drawing. I don't want to know how many hours I have done on this as yet but it has helped keep me at least focused because I am really not doing as well as I could be physically.

It's mainly been issues with pain and my asthma being troublesome. Not helped that I have had a vicious chest infection recently as well which has meant that I have had all the stuff that comes along with that (fever, pain, feeling like an elephant has sat on me). Just what you need when you're trying to orchestrate something big like moving. I will be moving in the next week or so (not going to say where publicly for obvious reasons) to my new adapted bungalow.

I want to be clear about the reason I am leaving my flat. It comes down to my health deteriorating as much as it has over the last 2 years or so due to my asthma getting worse and my lungs becoming as they are now. Being on oxygen has been a brilliant change in me (before I was barely awake, greyish and couldn't speak more than a few words and walking to and from the toilet was like running a marathon for me) but its not stopped the inevitable truth that I am no longer able to use my flat as I used to. Its kind of sad because I have been here for nearly 5 years and this place has been my place of safety when I felt scared or the place I came back to. Its going to be a big change but one I can be sure is right for me. In my new place, I am going to have more access to the living room, kitchen and I will have a "wet room" so that I can have a shower and not have to rely as much on carers or other people. I will still require care, we know this, but if we can get it so that I needed less, I would be happy about that and it would be easier on the agency as well.

The hard part of this has been convincing myself that this flat is not going to be my home anymore. I am so used to it and heck I know all the little quirks and other things that came with it like the back of my hands. I will miss some things about the place and I will miss some of the people I got to know around here but it is all for the best reasons that I move and have a better chance at a better life somewhere else. It's OK to feel apprehensive though as I will have to learn new ways around things and where the new local shops, bus stops and other things are. It's close to where I used to live before so I am sure that I will get my bearings soon enough! Maybe a new year and a new start would be just the push I need?

Loves
Wendy xx

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!

Loves
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."

Sincerely
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.

Loves
Wendy xx

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