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

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