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.

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


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