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.

Friday 31 December 2010

Happy New Year...

As 2010 draws to a close, I am ready and willing to face the new year with eyes wide open and ready to accept and conquer the new challenges that lie ahead of me me, with grace, humor and, of course, courage to speak up when things aren't so good and ask for help. I am not going to set unattainable goals for myself, as doing so will only encourage me to become melancholy when I fall flat on my face.

Before I get in to all that, I thought it would be a good time to reflect on this year. The good, the bad, the wins and of course the losses which made the victories seem even sweeter. Well, I started this year with the mother of all infections and was in such a state that I was tired and in hospital. I couldn't breathe well at all and felt as though there was no hope in sight as we started the quest to get me on home nebulisers. We got the referral to Birmingham Chest Clinic by a group of us, Steve, Nathaniel, Bean and myself. We all went to see Dr Pike and after a good long talk about how I was, and the quality of life I had at that moment, we went to get a specialist view.

I struggled on, through college shoots (passing out on one and falling asleep at a table on another, poor Sean had to poke me a few times because I was so tired) and plenty of other things. I think the most memorable and the one where I really summoned what was left of my strength was the Worcester Uni shoot. We had a hospital scene (of all things) and I really came in to my own by helping dress everything for authenticity. We had dummy drip lines. Who better to apply them than the one member of the team with the bleary eyes, all the pills and inhalers in their backpack and multiple healing sites where drips had been atatched and ABG's had been taken less than 24 hours before. I felt good for all the help I gave the team. OK having attacks around them, that was something else entirely.

So we crawled in to March. All the Pred and Olanzapine (an Antipsychotic I used to take for Bi-Polar) had bloated me to the point where I looked like I had been inflated with a bike pump! I was ashamed of myself and began to hide away, but I had an appointment to go to. I felt like a rabbit in the headlights. My palms were sweaty, I was trembling and scared. Little did I know, but my life was about to change so much. After a long chat with a young registrar by the name of Dr Snelson, during which she comforted me as I told her how miserable I was, how often I was so poorly I couldn't function and how I needed just to get well, she started my home nebulisers and said it was astonishing that I wasn't using them already. All I needed now, was to get a pump and nebules from my GP.

I got my nebules from Dr Pike and he was glad that we were moving forward. I think it always made Dr Pike quite sad to watch me go from a pretty healthy and active 18-19 year old, to 22, scared and struggling to breathe or do simple things. He prescribed them and gave me very strict instructions, about use, pred and other things. We finally felt as though we were getting somewhere, now all I needed was a nebuliser compressor. And my dear friend Penny helped me there. She gave me a Freeway Freedom home nebuliser unit. It has been my companion ever since that day and have even been on stage with it at my side.

I think everything went well from there, I followed Rachy on her transplant journey, shedding tears whenever things went awry, smiling at her progress. She really is inspirational and wonderful and to see her doing as well as she is makes me feel so proud to be acquainted with such a sweet and gentle soul. As for me, well I started rebuilding myself and joined Omen Shadow. We worked together and I really enjoyed myself, I was looking forward to our first gig, but just 2 weeks away from it, I had an accident.

It was May 10th. A wonderfully warm and sunny day. I had an appointment in Birmingham for a CT Scan of my chest (that in itself will be another story) so I went to the unfamiliar place of Adderley Park. I got off my train, asked some directions and got walking. It was a 2 mile walk I later found out. I was about halfway there and I tripped on a paving stone, my left foot rolled in under me and I heard a slight pop. I stopped as this lady asked if I was OK, I smiled and said I would be fine. I was convinced it would just be muscular and would ease as I walked on it. Shock can be a funny thing, but this is either a testament to my bullheadedness, or just my stupidity at times, or even a bit of both. I hobbled the final mile.

By the time I got to my appointment, got changed in to their gown and put my clothes and shoes in to the bag, I was nearly in tears. I did my scan and was frogmarched by a nurse to A & E. I sat for a while waiting and talking to these two lovely girls, one of which was amused by my stories about the things I got up to. Turns out I have a lot of funny stories and anecdotes, often at the mercy of doctors and they can be very entertaining. Eventually, I was called through, sent for an X-Ray and given a pair of crutches to help me walk. We didn't think it was broken.

OK, we were wrong, turned out I had a spiral fracture of my 5th metatarsal. I was put in plaster and Steve and Martin came and helped me home. We laughed all the way and I went on stage at Kingsley Battle of the Bands and at the Queens Head a few weeks later with an Air Cast and crutches, playing while sat on a stool. I felt like a right plonker, but I played and went for it.

Now, here comes the EVEN funnier story. I was out of my Air Cast (after 8 weeks of it) for about 1 or 2 weeks, I can never remember which, and me being me I did something. Like my brother and mother, I have a bit of a temper on me. It takes a while, but I can be vicious when I get going but there we go. I was in a mood about something (I think Steve was irritating me by sulking about something or other, its THAT important I don't remember it) and I had been on this training course thing with the Job Centre, that was a bust so less said there the better, and was in a really foul mood. So after all of it, what did I do? Vent like a normal person? Scream or lash out at what was annoying me? Punch a pillow? No, those would have been sensible. I looked at the door, backed down for a second... then I launched my fist as hard as I could, denting the door. Breaking the 5th metacarpal on my right hand. 6 weeks in plaster later and that healed and I could play bass again.

What of my chest by this point? Well... it did what it does best, create and land me in hospital. OK it wasn't as often as last year, but the times I was in, I was staying and needed help. It was a frustrating and irritating summer really. Although I met Dr Mansur, my consultant, who started me on a couple of new medications, and other things which helped me get at least a little more comfortable. Kind of.

On the plus, my time spent not really doing anything has put me in touch with someone called JP who I have joined with in a band. This will be fun and we are having our first practice next week so this will be fun.

So, my aims for 2011?
  • Get out of the YMCA.
  • Finish my HND
  • Less hospital visits
  • Do something nice for myself at least once a day.
  • Tone up and look good again.
  • SMILE more.
Simples.

Loves
Wendy xx

1 comment:

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