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 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 and Heredetary Spastic Paraplegia. 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'll flap my broken wings and erase it all someday... You'll see.

Wednesday, 21 September 2011

A Retrospective Look...

This year has really been a year of change and a year where I have grown up so much. I think at this point last year, I had all but given up on everything and everyone. I didn't care what happened to me and I didn't care whether the next day would be my last. I would cry so much because at 22 years old, I didn't want to think my life was over. At 21 I tried to take my own life.

I never really said much about what really happened there, but I kept a diary where I would write down everything I thought and felt. In the diary, I saw cycles of depression, dysfunctional relationships and a lack of just wanting to get through this. I had given up completely after my 1st year back on my HND, where I had been absent for 6-8 weeks, I can never remember how many exactly, but I always remembered the reason. This had all started and I had been so sick. All I can remember about the worst of it was trying to sleep at my then boyfriend's flat, then I remember waking up in Resus. I had never been in there before. It was so frightening. No one knew whether I was going to make it through that night. I was so unwell and I slept the next day just so that I could recover.

Instead of embracing the fact I had survived, I sank lower than ever and due to some really unpleasant and dysfunctional problems. I don't want to chew over the past and what exactly happened there because there is really no point now and it won't actually change or fix anything. I do remember that one day. It haunts me even now and I remember all the details, the words said and then an action that would change my life forever. It had been an argument about the housework. That was always an issue and I came to a devastating conclusion about life which made me feel so hopeless. I remember saying the words "People don't change."

How wrong I was.

I remember putting all my drawings away, back in the portfolio and sliding that back under the chair where I kept it at the time. I remember the numb feeling of calm that had come over me. It was like nothing else mattered now and I didn't want to find out what would happen next. I was so calm and collected as I walked in to the kitchen and looked at it. In the freezer board, there it sat, this enormous knife. It was massive and it had sharp, jagged teeth and I ran it over my arm. Blood went everywhere and I automatically snapped out of my trance. I got myself to hospital where my wound was cleaned and stitched. This is where it all began.

Since getting out of that flat, my life has improved and my confidence has returned. I don't look back on the past and lament it. Why should I lament something that really doesn't matter now. The past is the past. We can't buy back yesterday nor can we change what we've done/said or anything else. All we can do is learn and grow. That is what life is. We learn, we grow and we mature. I know now that the tests I went through have built me a strong character and a LOT of resolve. I've seen some of the worst of human nature and I did even worse things to myself. I hurt myself because I was convinced that I was the one who was bad. It was all my fault and that I couldn't ever work out how I felt.

I looked in to who I was as a person. I realised that I have so much more strength than I ever thought one person could have. I had to accept myself for WHO I was and WHAT I am. I had to learn to like myself and appreciate everything thats precious to me and keep that brave little smile and a song in my heart to keep my own moral up and my hope alive. My hopes for the next year are to finally free myself from everything that has been problematic and finally cast aside that old life. Never to return to it again. I hope to get back in to education and continue to go from strength to strength with my relationship with Tom.

Tom saved me. In every way that one person can save another. He helped me realise a lot about myself and even learn to love that person and enjoy being her.

Loves
Wendy xx

Review With The Doctor...

I had been avoiding this for a while. Partially because I just didn't want to talk to anyone about whats been going on. Partially because I was embarrassed. And Partially because I was trying my hardest to just get back to normality (or what normality would be for a 23 year old). Today I finally managed to get to see Dr Pike. We have maintained a very good relationship over the last 3 years and I mean between us we managed to talk about everything. I even confronted the issue of how I'd honestly been feeling about all of this.

I explained about those days where I get sick and I really feel redundant and upset, like "what did I do this time?" or "for F*** sake!!" and how I am always wondering what I did wrong this time. He explained to me that people with asthma fall in to two families. Those who only get the occasional attacks, they just need an inhaler and they don't have to think about it later. Then theres people like me. As Dr Pike calls it "The scary asthmatics". My asthma can go off over anything and everything, even without any provocation. That has happened a few times where my asthma just decided to go SNAP and I didn't even get a warning at times.

I had no real warning on Monday when it happened. It just kind of went off and I couldn't even get back in control. It was really scary and nasty. How I'd been pretty OK during the day. Maybe I was a bit off and I couldn't concentrate, Sunday was awful because I couldn't keep focused on anything from my beloved Guitar Hero or Rockband to a Final Fantasy game which would normally have kept me entertained for hours and hours on end. I have managed to play Final Fantasy 7 for 12 hours straight before now which was so much fun, and I got so far in to it, I think I did all of Disc 2 that day!!

I then walked up to the bus stop with Tom. I was a bit out of breath, but I was OK. I was coping until I got on the 55 and nearer to my appointment. Things just refused to improve, and it didn't matter how much I tried to throw at it. It didn't matter how often I took my inhaler or my nebuliser. And I just couldn't do it anymore. That was so freaky and I couldn't even entertain the idea of talking about my mental state, although we did decide that I needed to be back on my antipsychotic and up my antidepressant to 200mg. Its a crushing blow for me at times it has to be said, but I think if its for the best then its for the best and I need to just take it in it's stride.

To be told that even though I am only young and I go through such a life limiting problem from day to day, the fact I can stay strong and take it all as it comes, its truly magnificent to see me out and about and trying my best to enjoy my life even on the bad days. And we all have those bad days. Yesterday I was so exhausted that I fell asleep at 10PM! Thats the earliest I've been in bed in a long time. But I slept straight through to my alarm at 8AM and it really improved my mood.

Loves
Wendy xx

Tuesday, 20 September 2011

The Invisible Condition...

Its been something that has been mentioned a lot lately, on Twitter, on Facebook, heck even in some blogs. There are so many people out there who live with these invisible conditions. These include things like Asthma, Fibromyalgia, ME, Arthritis and other conditions that I know various sufferers of and even invisible conditions that I have been forced to live with myself. Invisible illnesses are by definition illnesses that people who don't know could never tell you were sick. It kind of has no telltale signs and the sufferers are constantly struggling against people who don't have any illnesses and who make assumptions that just because you can't see what is wracking our bodies with pain that it probably isn't there.

IT ISN'T TRUE. AT ALL.

To most people out and about, I probably look like any other 23 year old woman who walks around getting her day to day life sorted. I do this because I have to. I don't rely on other people unless I need to and it means that it is easy to make the assumption. Then people see me at my worst and they can't believe what they're seeing. During an asthma attack, I make some noises that are so unusual or scary that people don't quite expect it. I become weak, I become disinterested. I don't seem like normal at all.

Not many people have been able to see it as I don't like letting my guard down at all around people. Too many people have made hurtful and cruel assumptions about my health without finding out the reality and when I see people doing it to others, it makes me feel sick to my stomach. Yes there have been people who have faked illness in the past, but what about people who genuinely have a condition, is it right that not only do they have to live with this, but they have to prove it to others. It just strikes me as wrong.

Looking at the way the DLA system works. That in itself is a minefield to work out. You have a form and it takes so many draining hours to fill in every single intricate detail of your illness and how it affects you from day to day. When I filled my form out, I spent a good hour on my own crying because it just make me feel so bad having to look at my life that way and how it has been. I had never really stopped and thought about how unwell I felt at times or about those days where I struggle to get out of bed, walk the 10 feet to the toilet and then back to bed. At times the reality of that is all too real and it was never something I ever thought I would have to comprehend. But life has that habit doesn't it.

Loves
Wendy xx

How Annoying...

Its been a few days since I last felt up to blogging, but I thought now would be a good time to update on my progress and my floating around through time, space and all the rest of it. I guess just lately when the old pattern restarted itself, it took my by surprise and I wasn't expecting to be thrown back in the maelstrom of T1BA but I guess that's how life goes sometimes. I have started to accept that any time away from hospital is time away and I should be thankful and try and enjoy myself, but there are days when I just feel so depressed or miserable that I just hide and bury my head in the sand and cry it out.

Sometimes a good cry is cathartic and it helps to clear ones head a little before succumbing to fear and paranoia which can hold you back and completely control your life. I have been all about making positive changes in my life and making things that before were frankly a bit shitty less so and making the most of what time I get between illness and recovery times. It takes me anywhere between a week and a month to recover from my asthma when its bad so thats a long time to be sitting around and you wind up thinking over every little detail. Everything that you could have, or could not have done to make things better and then getting angry with oneself because you start playing that annoying blame game.

Yesterday wasn't easy. But I know now that it had to happen and there was a pretty good reason for it. I had been off colour all day really, and the day before if we really wanted to look at things. I had been coughing. A lot and I was exhausted by it. When you cough like that its like running a race because you work so hard to just get whatever it is that is in your airway out and gone. Having bilateral wheezing yesterday and only managing to get it down a bit with a whopping 5 salbutamol nebs, o2 and some atrovent, I think the steroid I had injected really was needed to bolster my lungs up a bit and help them get back their strength.

Over the next week or so, I really want to concentrate on recovery and getting back on some kind of stable level and stay there for a while. Thats my dream and this is my reality as unpleasant as it may seem. This is my life and this is how I have to live it. I am happy with who I am and I am proud of what I have managed to accomplish over the last year. I mean now I don't live in the YMCA anymore, which was frankly a dive. I don't feel so drained or controlled and I am happy.

Loves
Wendy xx

Sunday, 11 September 2011

In a Reverie...

Today is just one of those days I think. My chest is really sore and feels all raw and painful. Breathing is still hard and I just feel frustrated and fed up in myself. I am happy with life right now and I have pretty much everything I could ever want, except a stable state of health which seems to be like an impossible dream sometimes. I mean I did feel like I had made some headway but as the cooler weather is coming in, I am starting to feel it again. I wonder sometimes whether this feeling of insecurity and constant feeling of chest tightness is just one of those things. I really can't go back to the life I had.

Mayve I feel so down at the minute because its coming to the end of what has been a good weekend with Tom and I always hate it when he has to go home. I understand why he needs to and I understand that its good for both of us to spend some time apart, lest I make the same mistake I always make and try and move too fast, telling myself that it's probably the best thing right now. Where in reality, the best thing for me is to live alone and work ME out and figure out what makes me that person. It has its moments I will admit where I lie in bed looking for someone or something to cuddle up to, but it is important right now, especially that I become more independent, lest I fall in to the usual traps, which would subsequently then be my own fault because I knew what they were and I knew I needed to avoid them.

What I am faced with seems to be an unending tirade of infection, and asthma wreaking havoc with my body, and not a lot of choice but to just accept it. I guess there are times it seems a little bit unfair, but then I remember that I am not alone in all of this, even if some days I feel it. Some days I do want to kick and scream and get mad, but there are more days when I just decide that getting upset and playing the blame game never got me anywhere. I have had to look so objectively past whats happened recently and look at just the objective facts and remind myself of them so that I can't pretend anymore that this didn't happen.

Since having my diagnosis completely cleared up and knowing exactly what causes my asthma, I have been a bit easier on myself and I have stopped making myself feel bad about it and letting other foolish people who HONESTLY have NO idea what they are talking about get to me. A senior clinical lecturer and other specialists aren't going to diagnose something unless its there and you know what else, I only strive for decent diagnosis so that I can make sure I am managing the condition more effectively. No other reason. I do find it all the more galling to have to deal with people like that particularly after a night in resus.

Now, for those of you who are lucky enough to have not experienced this (and I apologise now if this comes out patronising, but right now I am in such a ranty mood and I need to just burn this off before I go and kick the shit out of everyone who made me doubt myself), resus is the short version of Resuscitation. Generally when someone goes in Resus, they are in a very VERY bad way and they need to be seen, treated and helped pretty much right away. I was in a bad state that night and I was very ill, so having to deal with idiots after that made me so angry and stressed that I nearly went back in to hospital.

I wonder sometimes why I listen to some people. I wonder why I haven't told others where they can shove it and why I still give a toss about them. It's not that simple though is it? I won't be too forgiving in the future. Its my weakness and its the reason that people have been allowed to hurt and upset me again and again and I think it needs addressing now. I feel better for a rant, I will admit.

Loves
Wendy xx

Friday, 9 September 2011

A Big Thank You!!

I wanted to take a chance to thank everyone who has helped me since splitting with my ex and the true friends who stood by me and helped when I needed it. Nat, JP, Bean and Penny, you guys have been amazing, keeping my spirits high and making me smile when I have been stressed. You make me so happy to have you all in my life and are real blessings. Penny has helped me a lot since leaving the YMCA, from going out for a toddle together or just having a chat. It helps to get it off my chest and to have a maternal figure around to make sure I'm alright.

I wanted to thank Nat and Bean for a few nights ago. Since leaving hospital I had been feeling horrible and not really up for much. Those two came around to me one evening and we spent some time playing EDF and just laughing. It was wonderful and the fact that they prepared a care package for me, that was just so sweet and thoughtful. It meant a lot to know I had good friends I can count on and knowing that should that happen again, I can rely on someone to feed my piggies for me. Josh is another one I am thankful for. Whenever he comes around, he always makes me smile and its nice to have such a kind person as my adoptive brother.

I also want to thank Tom. Tom has been absolutely incredible about everything. From my break up and how messy that became, to sorting out my money, my home and just about everything in between. He has coped with my moods and nurtured me when I have felt depressed. He has cared for me when I have been so unwell with compassion and the kind of loving care that I needed. We were always there for each other anyway, but you know, now its so amazing and we're closer than I have ever been with anyone. He makes me feel complete and whole. There is nothing missing and I am happier than I have been for years.

Last of all, I am thanking you. The readers. It is you guys who helped me realise that even though there were days I felt it, I am not really alone . Not anymore. When you read my blog and accept me in to your world, its like I am finally able to break out of one of the loneliest places ever. Being ill can leave you feeling alone and isolated, wondering what you did to make this happen, even if it was just a genetic thing, passed down through your mother's side of the family. So thank you. For reading this and I hope we can continue this journey for even longer, and by the time I'm 30, I can look back and laugh over the last few years.

Loves
Wendy xx

Pain...

Today I am just racked with pain all over. It hurts to breathe, and I am finding it harder to think while sitting here in bed and trying to just make some kind of sense of why its hurting so much. My back is sore and I can feel the pressure in that dodgy disc really building. I guess I didn't really sleep so well and that never helps anyone does it? I guess waking up in a cold sweat and shivering so hard that I was rattling the bed isn't anyone's idea of fun by a long shot so I guess that how I feel now is just part of whats going on in my body.

What is bothering me the most is if this is EXACTLY the same pneumonia that I had a month ago and was given a course of antibiotics, why has it not even attempted to go away? Or did it start going away but because the course was only a week, did it just come back because the bugs weren't completely gone? Either way, today I have just not been my usual self. I have been subdued and barely able to concentrate on anything for more than 10 minutes at a time, unless it was Bejeweled which had bright flashy colours so I actually ended up watching it rather than concentrating on it.

This isn't really the best of days as of late and I hope upon waking tomorrow I may have managed to shake this lack of focus and concentrate on me for a bit.

I tried to eat today. I did try and I managed to at least eat some baked beans and veggie sausages. But I was slightly upset that when I reached up to get the can out of the cupboard, I was unable to lift it. I then had an even more amusing moment where I tried to do something involving the can opener and a saucepan. Don't ask me, I'm still freaking about the dead spider by the bed.

Loves
Wendy xx

Tuesday, 6 September 2011

I Need To Take Things Seriously...

That seems to be the biggest lesson life has been teaching me. Even though just lately things had slowed down and my asthma was being a bit more well behaved like it used to be. I think I started getting cocky and thinking that now I had got to the end of a bad place and I started being irresponsible. I know I should have gone in on Saturday when I was really not quite right, but I had kind of convinced myself that it was just a phase. It would be OK soon. And that was bad.

By yesterday morning, I knew something wasn't right. I couldn't feel my right lung doing anything, and it felt like there was something really wrong. I was in more pain than I had been for a long time and I couldn't walk further than the bedroom and back without feeling short of breath and wheezing. I was trying every measure I had available to me, from nebbing regularly (I was on hourly nebs in the end) to just trying relaxation techniques that doctors had suggested years ago (forgetting that the particular doctor hadn't got a clue and even admitted he was wrong) and eventually I had to give in.

Tom was fantastic, he came to me, called an ambulance and he helped where he could. The first paramedic couldn't decide what was going on, first my chest was clear, then she decided I was a tiny bit wheezy, then she decided as my SATs dropped to 92% that maybe I was having an asthma attack. By this point the other crew were there. And they knew right away. Time wasn't wasted and by the time I arrived at hospital, I remember speaking to the sister and she decided within a minute of me being there that I needed to be taken straight through to Resus.

This is only the 2nd time that that has ever happened and I have been taken in to there. This time, although I didn't nearly arrest, I was definitely in a bad way and I needed to be seen right away. While the doctor was looking after me, I remember a nurse coming in and asking how long he would be as another of his patients was wondering how long she would wait for her stitches. I nearly laughed when he turned around to the nurse and said "Tell her she has to wait, I am dealing with a patient who is short of breath and is fighting for her life!"

I must have been falling asleep because the next thing I remember it was nearly an hour later and I was still in Resus, but my mask was changed from a nebuliser to a Non-Rebreathe mask. I just remember being so comfortable and wanting to nap. I was exhausted. The culprit? A pneumonia that I had a few weeks back had not cleared completely and had come back with vengeance. So now I am home, with 7 days of 40mg pred, 500mg Clarithromycin and 500/125mg Co-Amoxiclav and strict orders to get some rest and recover.

Loves
Wendy xx

Monday, 5 September 2011

One Year Later...

Its been nearly a year since I started my blog and I started sharing my innermost thoughts and feelings. I have found it cathartic and its been a good way of not allowing all the bullshit and immaturity get to me. There are a lot of immature and pointless individuals in this world and they really have nothing to do other than bring other people down. I don't even pity these individuals. They are really not worth a second of my time, nor do they deserve even the tiniest mention of their names in a blog about how I have been.

It makes me angry when I have to sit and read or hear about people who fake being ill and sit there and have no evidence to support them. It makes me glad that they never get the benefits that they don't need or the support of excellent medical teams behind them. I have spent the last year or so building my relationships with my doctors and they have backed me all the way with my claims for ESA, DLA and my registration with the local council. Even when I had doubted myself or refused to accept that I have health problems, they have been the first to show me test results or other things that have really proven otherwise (my asthma consultant wants to give me a photo album with my CT results so that I can look at them whenever I doubt myself) and my GP has often comforted me when I have cried my eyes out because there are days when it all feels too much.

Right now the focus has been on getting my asthma in to some kind of control (which has been getting there) and making sure that pain levels for both my asthma and my back problems (which the idea of an operation on it just isn't possible at the moment, nor is it what I really want because of my asthma) are under some kind of control. The medication I take for my pain and my back are working well and the nerve pain seems to be subsiding a great deal. For one, I can walk a hell of a lot better and don't need my crutch as often as I had needed it before. I still have my bad days, but that is to be expected.

As far as my asthma goes, its been a close weekend and I know that. I just don't like admitting to myself when things are bad, partially its because of fear, not of the hospital, but of the people around me. Tom has been wonderful in reassuring me that it is not the case. A trip to hospital isn't going to result in a temper tantrum worthy of a 3 year old. And this has helped me make better choices when it comes to my asthma. Yes, I do end up feeling exhausted some days, but that's the result of working so hard. My lung function was down in June, from 67% to 55%. The capacity is there, but there is just no accessing it at times, because my airways close that much.

Knowing what I know now, its easier to accept things and I understand now that test results don't lie. Especially when they are consistent and the tests have been as through and exhaustive as ones I have had. The constant testing and trying of different medications had taken its toll on my body, physically, emotionally and mentally. Its been a year of change and things have been improving, I can't deny that at all. I have some quality of life back, and I have a clearer idea of what I am up against. As much as a pain in the ass all this has been, its helped.

Problems that caused me trouble years ago have been properly and more accurately diagnosed and things that we didn't even know about have been found and the reasoning behind them identified. The result of this is of course that instead of putting a sticky-plaster over it, we can actually go further and correct what we can, control what needs to be controlled and I can go on living. I said that this year was going to be one of testing, but I never comprehended just how far that would go. I am glad in some ways because had I known what I was going to be put through, I probably would have run away because I had been frightened and I would never have experienced what has been one of my better summers in nearly 5 years.

Thats scary. My asthma has been problematic since I was 18. 5 years of having to put up with having to deal with symptoms and 3 years of being in and out of hospital, no wonder I was close to breaking point.

Loves
Wendy xx

Friday, 2 September 2011

A Farewell Drink...

In 3 weeks time, a close friend who I knew from school is leaving to go and live in Uganda. She is such a lovely girl, is our George and her going away is the result of her own hard work and the dedication she has shown over her years of training to become an OT. I am proud of her and I am proud to call her my friend. Today, she came to Redditch to see Ant and myself as a way of having a day to just hang out. I enjoyed this so much and after the chaotic few weeks I have had, its nice to be able to kick back and enjoy myself. I felt like a 23 year old, instead of a 73 year old.

We went to a pub in a village just outside of Redditch. The Jubilee in Studley, was a pleasant and rather lovely place to have lunch and we sat in the beer garden, a large field in the sunshine, with some animal enclosures at the end of the garden. These were particularly interesting to me and I went to have a look at the animals. The sight that met my eyes was met with my heart melting! There were many rabbits and, a personal favorite, GUINEA PIGS!! I love guinea pigs, with their lovely little noises, sweet temperaments and the cheeky way that they look at you. Adorable creatures. I have 4 of them at home and they're just wonderful pets, but to see an enclosure of them running around really melted my heart.

My heart was further melted when we went to get some pet food for my lovely little lot and I looked in the enclosure of guinea pigs, and what I saw, my friends had to remind me there just wasn't anymore room for anymore animals at my home right now. A black eyed piggy who was pure white! His big eyes and floppy pink ears and then the wheeking... he sounded just so much like my Hope. I miss Hope terribly, I think it was because he was always a bit sickly and we always knew he was going to become very ill. I just wanted to save him. Like Alphonse, I had Hope when he was very young and very small and had become very attached very quickly. I miss them both and do shed a tear sometimes when I remember them.

It was the way this little baby came right up to me, wheeking and looking extremely cute. He was sad when I had to say goodbye, but I know I did the right thing in resisting as I just don't have the space right now. I already have 4 guinea pigs and they can all be a handful sometimes. But I do love them. All 4 of them are special and sweet, little characters and playing with them gives me nothing but pleasure. I've kept a number of different animals and I have never once regretted it.

George has gone, I will miss her, but will be keeping very much in touch with her. I hope it goes well for her and her time in Uganda is rewarding and she enjoys it, but as for Ant, well I intend to spend more time with him, as well as my other friends. My friends are so important to me, as well as Tom and our little (unconventional) family.

Over this last year I have really come to appreciate more the people around me and the relationships with people. I'm not as alone as I thought this time last year and even though it felt bad back then, I wish I could go back and tell myself that what I was feeling would pass and there was a way out. I would tell myself that I needed to get out of that relationship and I needed to get myself somewhere I could be safe, happy and feel at ease in my home.

Loves
Wendy xx

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