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, 30 March 2011

Painting...

It is amazing how a coat of paint on the walls can freshen up a room. We spent the afternoon painting the flat, with Rich and JP. We didn't expect to get that finished today, which was amazing in itself. We managed to paint a bedroom, living room and the hall all in one afternoon. I must have looked like a woman possessed as I painted 2/3 of the bedroom and the lower 3/4 of the hall walls. Nipping in every so often to touch up any part of the walls that were a bit patchy and then moving on to the next bit. I must have gone for 3 or 4 hours straight without a break. I was loaded up on meds and caffeine so my asthma didn't kick off too much.

I got told off by Rich and JP because I was working so hard and tirelessly. It was a labor of love and it was enjoyable to get the place sorted. I am paying dearly for it now mind, my chest feels horrible and sore. I worked so hard but it felt so worth it. I may end up having an attack sooner or later, but I really want to get the work done before that happens.

The next bits are going to involve moving our things over to the new place, I will probably be there all day tomorrow, after of course getting the curtain track hooks so I can hang the bedroom curtains up. Leaving the YMCA has been so weird, but I don't feel as though I am going to miss it.

Our new place has a wonderful feel to it and there has already been moments of laughter and happiness. OK so it involved JP making the woman and sandwich jokes and I decided to chase him through the flat with a loaded brush... We bounced around for hours, and it felt as though the last 2 years never happened. The sadness, the anger, the regrets, they all melted away and left us with this amazing feeling, and it felt incredible. I felt incredible.

Loves
Wendy xx

Tuesday, 29 March 2011

Opportunities

I was checking my emails earlier and noticed that I was offered a writing opportunity for a company called Health Central. I am so happy about this and feel so honored that someone would contact me and ask me to write at least 2 articles a week for them. All I can say here is THANK YOU so much to everyone who follows my blog, reads it and all the positive input that I have had. Thank you for believing in me. Thank you all for your support and of course a big THANK YOU for putting up with my variable moods, strange rantings and other things that have made the last 6 months, well interesting.

We have started some of the process of moving, I moved 4 of my models over to the new place, I miss them at the moment but I know that they make the place feel different. The air is clear in there and there is such a lovely feel to the place. We began painting the place which has been an interesting experience, but on the whole, very pleasurable. The best part is knowing that all of us, me, Steve and our wonderful friends are all coming together to make the flat in to the best home we can have. It's not going to be just bricks and cement, but a real house of love and, I hope, happiness.

Leaving the YMCA doesn't feel like an ending. No, it is a new beginning to something special and something we're all building together.

Loves
Wendy xx

Monday, 28 March 2011

Positive Steps...

I know there has been a lot of negativity around lately so I think when we have something good happen, it is important to celebrate each victory as it comes. This week has already started on a good, positive note, well for one, we're preparing to move out of the YMCA, which I think has been the reason we have been so unhappy these last few weeks. No matter how much you love someone, you can't live in each other's pockets without wanting to kill the other person.

Also, another positive thing that happened today was my chest behaved so well this afternoon, I was able to walk (the flatter way, through the Arrow Valley Park) from our flat in Church Hill, to our new place in Abbeydale. It was a bit of a walk, but it was worth it and I did feel good about myself afterwards. I wasn't aware just how much carrying that extra weight was making me tired and making the walk more difficult so the weight loss is a definite win there as well.

I was really proud of myself earlier when I managed that walk. I think I kind of windowed myself in the invalid role and didn't allow myself to see what exactly I COULD do, rather than focusing on everything I found hard. I am really looking forward to this move and getting out of the YMCA. Our rescue pup is settling in well and has been successfully bonded with my eldest boar, so Patch is now happy with Kadaj. When we move we want a small outdoors enclosure so that they can play and explore their new garden.

So it is goodbye YMCA, YMCA mentality and feeling sorry for myself.

Loves
Wendy xx

Our YMCA Days...

Are officially numbered! In 7 days our official tenancy for our new home in Stanley Close begins next week which means that our process of moving out of Knowle Close begins tomorrow, when we sign the agreements and get the keys to the new flat. We're both really looking forward to this. It means we can leave the YMCA for good, never looking back or wanting to live here ever again. It is a big move forward and a big step in the right direction.

I guess I can honestly say that the Village People got it wrong. It wasn't fun to stay at the YMCA. It was noisy, the flat was a shoebox. The doors never closed properly and the place always had the feel that would more commonly be associated with some kind of prison. Not a home. Everyone here always seemed to have this repressed and unhappy look about them and no one trusted anyone else. The walls were paper thin so you could hear everything and everyone else which is not fun, because they can hear you as well.

We went to view the new flat today, and it was lovely. It is ground floor and it is quite a big place. Much bigger than where we live now and its a lot more private. I mean I can actually have a room where I can sleep and relax in peace without the worry about dub-step music or drug dealers. I wonder about having my new items sent to the new place, but what I can do is send them there and if I have to I can collect them from the Depot.

So tomorrow we are going to sign for the keys and the moving process begins. I have begun to move things like the cable, benefits and my bank account to the new place. Tomorrow, we can begin shifting some of the boxes of things over, which means that I am going to have to box up my models and other things.

Loves
Wendy xx

Saturday, 26 March 2011

Rescue Pup

So here he is in all his glory. My rescue pup, Kadaj. Hes a tiny little creature with such a sweet little face, and so many wounds, both physical and emotional. I can only imagine what this poor little thing has been through in his 6 weeks of life. Half of his ears have been taken away in chunks and he has so many cuts and scars on his little back. Poor little angel must have been through hell.

I am glad we went to look at the adoption centre at Pets At Home, or this little guy may have never found a "forever home" and would have been put to sleep. We had room for him so we took him home with us, but we won't be adopting anymore now.

loves
Wendy xx

Friday, 25 March 2011

A Second Chance...

I have always believed that everyone and everything should be allowed a second chance at happiness. I think it definitely includes animals. It makes me so mad when you see and hear about these creatures who are being abused and intentionally hurt of killed by people because they can, from people who make dogs fight to guinea pigs who have had bad housing and have been left to be attacked or hurt by other animals, or living in dirty cages, the list goes on and on.

When we adopted little Kadaj, I could see that there was more to his story than we thought. Here was a guinea pig who was so nervous and frightened, walked with a slight limp and had half of his ears bitten away. I had to take that poor little thing home and give him a happy and safe life. It was the right thing to do. As I bathed him (he smelled like a dirty house and had so many scabs that had grown out and were hanging in his fur) brushed him and checked him over, what I found was shocking.

The poor little mite was covered in wounds all over his back. His back is heavily scarred so wherever he was before he was up for adoption, there was obviously an aggressive animal who was housed with him. Yes Hope can be a little shit, but these were not wounds inflicted by another pig. These were caused by something bigger. Much bigger. I had to clip away some of his fur around the wounds so we could get to them and clean them. The poor thing screamed in pain and fear and I felt absolutely awful for doing it, but I knew I had to. I knew I had to get to the wounds to clean them. I know in time, as both his body and his heart heal, he will forgive me for the fact I had to do the things I had to do, for his own good. 

I had a good day today with Steve, Nat and JP. We watched a movie (OK so I fell asleep, but I wasn't feeling as well as I could have been) and generally laughed about so much. It is nice to have such amazing people around me and I do feel like I am part of something. A non-conventional family of the sweetest and kindest people you could ever wish to meet.

Loves
Wendy xx

Wednesday, 23 March 2011

Tackling Hypokalemia...

After a good chat and checking everything over, we now know what we are addressing when it came to my weakness and exhaustion, muscle cramps and the fact that I would have been better known as "Sea Biscuit" among other strange and rather unusual symptoms. We did have suspicions that I could have been developing Type 2 Diabetes due to my steroids. Turns out a lack of potassium in my diet (over the last 6 months, I have really not been eating much by the way of good food) and the use of bronchodilators had caused me to begin the development of early stage Hypokalaemia.

If left untreated, this could have been dangerous, but now we are packing as much fruit and veg as we can in to me. As well as eating dark chocolate and other things to really increase my mineral intake. Just as well because my feet are cramping to hell! It's getting better thanks to some good food, and a good rest, but it was so painful earlier because my feet and my right calf were just agony and I was shaking so much I could barely stand up, I was so pale that I looked like I would pass out at any minute and I had already fainted today which hadn't helped. My BP was 70/69 which is low. Very low. No wonder I was fainting and looking like a zombie.

On a plus, because Steve thought I needed a pick-me-up, we went in to Pets At Home. We stopped by the adoption centre and saw someone called Marley. Now Marley was an 8 week old, tortoiseshell satin guinea pig who no one wanted to buy. We had to adopt this little beauty and bring him back with us. He now lives under the name of Kadaj and is a noisy little devil!!

Loves
Wendy xx

Tuesday, 22 March 2011

Making One Change...

Who would have thought it? I mean I am so chuffed by this result that I had to blog again. This time I think I wanted to explain things a bit and maybe offer a bit more clarity as to why things went the way they did. Now this is probably going to sound strange, but I have researched this and the doctor explained it to me as well so here goes.

Steroids:
Steroids (Hydrocortisone, Prednisolone) are used often for the treatment and recovery of patients who are suffering with asthma and acute asthma attacks. It is not advised to use it long term as it is so easy to become over-medicated with them. Now what happens there is that they do all kinds of things to your bones (making them brittle), your heart, your endocrine system and your immune system takes a battering. I have been on Prednisolone at varying doses from 5mg at the lowest (although this was never for more than a week) to 60mg. By this point, my body has started to really feel it. I pick up every infection and virus going, my skin was thin and it stretched beyond repair and my moods were made even more erratic and irrational, but my asthma wasn't responding as well as it should have been. It wasn't working as well as it could anymore.

Now what we want to do with the steroids is reduce them right down to 5mg, hopefully even stopping them completely in long term use, and only use them in acute situations.

Bronchodilators:
All asthmatics use these in some way. I had only at this point used Sympathomimetics, such as Salbutamol and an Anticholinergic called Ipratropium Bromide. These are the best drugs for us to use as they relax the muscles around the airways and make it easier to breathe. Unfortunately, because my preventative treatments were not working anywhere near as well as they should have been, I was using MASSIVE doses of reliever medicine to stay stable enough to stay out of hospital. The result of this ends up being a really fast heart rate, low blood potassium levels and lets just say, it explains an awful lot.


Now the best thing we can do is to find out how to improve my Potassium levels with a supplement and I have started a Xanthine medication.


Potassium Deficiency:

Usually symptoms of low potassium are mild. At times the effects of low potassium can be vague. There may be more than one symptom involving the gastrointestinal (GI) tract, kidneys, muscles, heart, and nerves.
  • Weakness, tiredness, or cramping in arm or leg muscles, sometimes severe enough to cause inability to move arms or legs due to weakness (much like a paralysis)
  • Tingling or numbness
  • Abdominal cramping, bloating
  • Passing large amounts of urine or feeling very thirsty most of the time
Loves
Wendy xx

Day One...

Well yesterday was the first day of my new medication. It is called Phyllocontin 225mg prolonged release tablets, Aminophylline Hydrate. It is different kind of medication to anything else I have used before. It is a bronchiodiolator, but unlike Salbutamol or Terbutaline, it works in a different way, relaxing the smooth muscles of the chest. It may be coincidence, but I have already started to feel a bit better, the onset of effect was about 90 minutes. I was impressed.

So yesterday, I actually managed to walk from the bus stop to home, no where near as breathless and was able for once to just use my inhaler. My peak flow was boosted to something it hasn't reached on it's own, 300 l/min, now that is more like what someone my age and height should be getting. I am down to 20mg of Pred and feeling a bit better for it. I actually am starting to feel like I am getting somewhere with all of this. It has been 12 days since my last hospital run, I am on a heroic dose of antibiotics, which will start working in a few days.

The more I think about the whole thing, I start understanding more about the way Dr Pike is working. He wants to focus on my chest in order to help treat my mind. I know that sounds really odd and usually they try to treat the mind to fix the body, but I did some research in some books, online and other sources and found out that depression, anxiety, fast heart-rate and irritability, as well as coughing up more gunk, are all symptoms of my asthma being so far out of control and the effect it was having on my self esteem. It did feel like I was failing constantly when things were going wrong, but I need to remember that none of this is my fault and blaming myself is the last thing I should be doing.

I also worked out something about Steve. He carries himself with a high level of aggression and anger, but he always assumed that it was just his nature. Until we found an old school report of his, and the teenager that it described was the person I thought Steve was. So we sat down and worked something out. Something had to have happened to Steve between school and now. More like some ONE. It turned out the reasons I couldn't let go of his dad and how he behaved towards me was because a part of him was still living, in Steve. Today we both had a go at not thinking about him or anything to do with him and it was harmonious. We didn't bicker. We didn't argue. Steve wasn't aggressive and I wasn't sarcastic and biting back.

I feel like I have dawned on the first day of the rest of my life. I am ready to take the bull by the horns and launch myself in to my new lease of life and if people don't want to be part of that. That is their problem and I say SOD them.

Loves
Wendy xx

Monday, 21 March 2011

Taking the Load off...

I think after a couple of really manic and rather unpleasant weeks, I think I may have finally gotten the hang of things. My rapport with my GP is great, so we could spend a long while just chatting about everything and nothing and finding an answer to what could be the real thing that was troubling me. I think, with so many things going on all at once and some things I didn't even KNOW about until now, we just got so wrapped up in trying to solve all the little problems but forgot to sort out that one big problem that was causing me trouble. So for now, it is a good idea to get my chest back on an even keel, persevere with my psych treatment, even if the extra Quetiapine was making me feel and act awful.

Our focus is my chest. Because I am always in some degree of respiratory distress, my heart-rate seems to have gone haywire. At rest it can be jumping along at 119bpm and if I am nervous about something, it can hit 150-200bpm. It goes without saying that this is a major issue and if my heart is working so fast, then it would make me feel absolutely awful and it is no wonder that sometimes I am absolutely exhausted, so I think if we can calm my asthma right down, I can help my heart chill out a bit.

I was started on Phyllocontin, a tablet that I need to take every 12 hours and it should make my asthma behave itself. Maybe then I can get off the pred and back to some kind of normalilty. So, my current list of conditions now stands at:

-Type 1 Brittle Asthma
-Bronchial Thickening (but not Bronchiectesis) and areas of scarring
-Immunosuppression
-Neutrophillia
-Hayfever
-Eczema
- Osteoporosis
-Irritable Bowel Syndrome
-Bi Polar
-Obsessive Compulsive Disorder
- (NEW) Borderline Personality Disorder (I was shocked too!)
- (NEW) Anxiety and Post Traumatic Stress Disorder (I knew about the Anxiety and kinda suspected the other)

Now we know what the problems are, maybe now we can treat them? Yeah... The problem there is that there are just so many different meds that I use at the moment and they ALL bounce off one-another, so how many of my problems are made my medicines? I am over-medicated (especially with prednisolone), but as soon as I stop using anything, the problems I used it for just come thick and fast.

Loves
Wendy xx

Friday, 18 March 2011

Steve's Birthday

Today was Steve's 31st Birthday and I am so glad I did everything I could to pull together to make it a good one. We had lots of friends round, watched DVDs, talked, for hours and then had Chinese food for tea which was a lovely change. It was really hard to get to this date, but we did it, we really did it and I was able to help him celebrate in style.

I think the only real bittersweetness of the day came when I noticed it was the 18th. 2 months today, I was saying goodbye to Alphonse amid lots of tears and him crying for me as I had to leave the room. I can't even go in to how much I loved that little pig and how much joy he brought to our lives. We have our pups and our special little guy, Patch, the hamsters and our amazing friends. That is our family. I think that was one thing that made the loss of our Fonzie so hard, he was like one of our family, like Hope and Gizmo have become.

Today, I was also visited by the wonderful people of WMAS to discuss my complaint and they assured me that the lady involved would get a good talking to and nothing like this would happen to me again. It was a complete neglect of my dignity and made me feel worse about myself than I ever had in the course of my illness. I am happy that WMAS apologized to me, and the service they provide really is exceptional usually. It really was just this one isolated incident and I cannot stress this enough.

My chest has been fighting with me and I was barely well enough to walk to the shops. My body was shaking from head to foot and I just couldn't get the strength. I was eating like a horse, which is usually a sign of something about to hit. I mean, whenever I get a viral thing, I eat, then sleep, then feel terrible for days as I cannot do either. So thems the breaks really on that front.

We are still elated by the letter we got yesterday stating that everything rent-wise was being taken care of and the council actually owed US money, for some council tax that we paid and panicked over so that was good news at least and it makes the trip to SBAU next week much easier for all of us. I have so much I want to talk to Dr M about and am probably going to take Penny's advice and email him, and take a copy of what I say so we can discuss everything in full. Why am I not getting better? What are we going to do next? Although Dr M only usually tries one thing at a time, but I do have a GP appointment sooner so I may have a good chat with Dr Pike as well. Can't hurt can it?

I just don't want to feel so unwell right now and I will fight until the end when I don't have to.

Happy Birthday Steve

Loves
Wendy xx

Wednesday, 16 March 2011

Calm Before The Storm...

Like most people with asthma, I have noticed a pattern in my attacks and when I have them. It usually starts with a day feeling pretty much OK, a few hic-ups and the like, nothing too drastic or painful. Then I have a night of poor sleep and the downward spiral begins. Yesterday was the beginning of the spiral and it usually lasts a few days, I think my record is about 5 days, and then I have the big one. And it is usually a BIG one, involving full on hospitalization, and everything they can do for me all at once. I then get left exhausted and my interest in anything generally sucks.

Hope has been unusually clingy with me, wheeking like mad and making a massive fuss whenever he sees me. We got him out and he wouldn't stop sitting on the right side of my chest, making enough noise for 2 pigs. I think he knew something wasn't right, animals are pretty amazing like that. He is an affectionate little guy, but this was different to the usual love and affection I get from my baby. It was more... intense.

As for my complaint that I made about the shoddy treatment I got from the ambulance last week, well someone called me, well 3 people called me. Now I must make this plain, I have no complaints with West Midlands Ambulance Service as a whole, in fact, I owe the fact that I am still alive to the wonderful Paramedics, Emergency Medical Technicians and Emergency Doctors that go out of their way to save lives of people like myself. The majority of them are caring and very lovely individuals and really do want to help and look after me. There has just been this one in the area who was like this. I have been attended to by her 4 times and each time she has been more interested in saving herself from making a mess rather than doing something to actually help me and I have always come off worse off for it, and my self esteem battered as she makes me feel like a right old fraud. The doctors and nurses in A and E always make sure that I am OK and get the help I need, I only ended up what they called "Clinically Exhausted" once and the doctor who cared for me was amazing and got me back on my feet.

One of the calls I had was from the Clinical Director of WMA, she spoke to Steve and told him that she would be looking in to this herself and she commended me for the bravery I showed by reporting this woman and she promised me that there will be no repercussions in the service I get in future and I should be confident in the work of the NHS and WMA. Which on the whole, I am. I really do trust them.

Loves
Wendy xx

Monday, 14 March 2011

Feeling Like I am at the End of the Road...

After yet another wheezy and tiring day, I am really starting to wonder what is next. When am I going back in again this week? What is going to happen between now and next Wednesday when I can see my consultant in Birmingham and what can he do about everything. My symptoms have been especially irritating just lately and I think what is bugging me most is the fact that I thought we had controlled this or were at least some of the way towards it. Right now, I need anywhere between 5mg and 40mg of pred a day just so that I don't end up in hospital. My peak flow is seldom over 250 l/min and I can't actually remember the last time I didn't need my nebuliser for a whole day. I am in pain. I am exhausted and I am actually feeling at times like maybe I should just give up and let this disease kick me about. Then I get angry with myself for feeling that way.

We have tried so many different kinds of drugs, and they have all done at least SOMETHING, but the problem is, it just doesn't ever seem to work well enough, even when your repeat has 18 items, and you have more medical devices around you than your typical hospital ward. Since having my nebuliser, things have been a bit better, I am down from 2 hospital runs a week (probably staying at least overnight at least each time) to just the one a week, with a 50/50 chance of being let home, depending on who is on at the time, but I am finding it very hard to get through the day and I feel so weak and tired pretty much all of the time.

I have lost so much weight recently and my skin seems to be hanging off me, unable to tone as it is so stretched and damaged by the prednisolone and other drugs. I am always tired and sleep is hard to come by, especially when my chest is bad, so I do feel quite cornered by the whole thing, I must admit. My friends all worry about me as they are watching me get worse right in front of them, they have wondered when they see me, will it be the last time they ever will. Every attack is scary and you always wonder, "Is this it?", and you don't want to face it. I think that is the problem, we know my asthma is out of control, in fact it is wildly out of control. Even Dr Pike has admitted it. How do we bring it back?

Loves
Wendy xx

Something Needs to be Done...

Everything has reached a point now where things just have to change, and pretty much rapidly. I cannot be allowed to get more unwell and continuing regiments of treatments that are not working as well as they could be and I seem to be getting back to where things were previously where I was getting admitted to hospital on a more regular basis. The problem we seem to be facing is what can we do? How can we fix all of this?

A few doctors have wondered whether a Sub-Cut trial of Turbuteline would be beneficial here, and I am open to anything right now. Even if that does mean that I will have to have a needle inserted in to me on a regular basis. If it means I can have my life back and be able to go back to work, and live a normal life, I can go with that. I think right now with my health the way it is, it is shocking that I had just been left to get to this state and the doctors never knew what they could do. It is a rather frustrating thing really.

As for the housing thing, well we have submitted an appeal to Housing Benefit for the back-date we should have received back at the end of 2009. We are getting as much together as we can to get that sorted out as soon as possible as we need to get out of this accommodation. It isn't appropriate for purpose and the noise problem is really getting out of hand. We ended up calling the Police on Saturday as the noise was so loud and the vibrations were so bad that I wasn't even able to lie down without being in pain. So I was left feeling pretty miserable.

I feel a bit better than I have recently. Emotionally, I have just left a lot of this to slide off my back and pretend it hadn't bothered me. But there are days when I have to admit, it does bother me. I do feel pretty useless about the whole thing and yes it does upset me when I am reminded of my limitations or the large amounts of medication I have to take on a day to day basis, dedicating a great deal of my day to making sure that I am able to breathe and stay out of hospital. It definitely was never a life for a 23 year old woman, but I know there is way worse out there. I think sometimes when you don't feel so well, it is natural to feel pretty low in yourself, but I think the important thing is to try and stay positive, rather than get upset.

On a lighter note, I had a piece of mine published by Evergreen Nebulisers. A company whose service is dedicated to helping those who need specialised therapy to those who need it.

Evergreen Nebulisers Blog

Loves
Wendy xx

Sunday, 13 March 2011

Thinking...

I know thinking is a dangerous occupation for me, but I can't help but think sometimes. I was reading back some of my clinical letters, discharge summaries and other things and one thing kept coming up, bronchial wall thickening and a lot of pain in my chest. There is also evidence of scarring and other inflammation, all connected with my asthma, but I am at the point where I want to know, once and for all, what is causing my asthma attacks and how on earth I am going to try and stop it. I guess the first stage is trying to establish to what extent this is all asthma.

What we know:

We know there is a reduction in lung function. There is a lot of expiratory wheeze and other asthma symptoms, and I do respond well to Bronchiodiolators. I have had some good results on prednisolone but it is not something we want to stay on forever. Variation in peak flow. Frequent exacerbation of asthma, getting more frequent just lately. Poor immunity.

Known Asthma triggers:

Dust mites and dander.
Stress
Excersise
Viral / Bacterial infections
Hayfever
Hormones
Smoke

Now thats all the stuff we do know, but what else is there to consider? I think myself it is down to working out what I am being triggered by and how to avoid it. I am not allergic to anything which is good, but I really want to get a methocholine challenge to see just how much of this is my asthma and how much could be something else entirely. Why am I getting so many infections? What is the effect of that?

I think it kind of helped to get this down somewhere so I could read it back or even get some other opinions on it.

Loves
Wendy xx

Breaking Conventions...

I think my life became somewhat formulaic. I mean we would start a week on a Sunday. I'd be pretty much burned out and exhausted, but would force myself to get up, clean the flat and ignore the pain I'd be in and not being able to breathe properly. Steve would usually be in the tail end of a sulk from Thursday, and I would have to settle that down. Then Monday and Tuesday would be tense, but we would be able to work through. Come Wednesday, Steve would have found something to fall by the wayside over and then the whole thing starts again.

I want to do things differently now. I didn't get up early, but I got the sleep I wanted and then as Steve wasn't sulking for once, I managed to get through the morning with no problems. I then had my lunch and gamed, not because I had to ask permission, but because I wanted to. I think I reached a point in muself where I realised that I didn't have to answer to anyone. I mean, yes I used to be scared of Steve and his dad, but now I just see them for what they were, pathetic children. Steve has managed to grow up a bit recently, whether this is a real change or until he thinks he'll be off the hook, I cannot say, but I would like to think that this was slightly more permanent than previous attempts.

As for me, well I think I have now started to become a bit more assertive and not allowing people or other things to use me as a crash-mat. If you have a problem with something in your life, FIX IT YOURSELF! I can't kiss all of your boo boos better or make the bad things go away. All I can do is help you, but you really do need to help yourself. This was how I was brought up.

I guess my resolution here is to just get things done.

Loves
Wendy xx

Saturday, 12 March 2011

The Truth, not always Beautiful, but always Right...

I think when you tell the truth, you should always be aware of the fall out, and seldom should someone feel awful about telling it. I guess sometimes I tend to wrap Steve up in cotton wool, because he never seems able to handle the reality of his situation, be it with his unemployment, his brother or other issues he has. At the end of the day, I can't always be there to protect him. I am not his mother. I am just an innocent bystander in a lot of this and I shouldn't be expected to try and play the hero when I can't manage to save myself.

I am tough at heart and I know my own mind, but in this one, I do struggle genuinely. There is the Luke situation which I know I cannot do much more than I have with. I have reported it to Social Services, but what he needs is his big brother to come and help him and Steve wasn't doing that. I needed to speak honestly and he needed to know where he was falling down. How could he have gotten back up when he didn't even understand where he was going wrong. It's hard, but I have a lot to deal with from day to day and I just want him to follow through with something more complex than a turd in the toilet, if you will excuse my crudeness.

Thing is, he is in a funk, which after being told that kind of truth, I do understand. I do. But I really fail to see where settling in to self pity is really going to help resolve the situation. The truth of it is, it WON'T. Been there, done that, got the T-Shirt and trust me, it really didn't get me anywhere. I wasn't suffering any more or less and I certainly didn't feel any better.

OK so some truth about what is happening to me at the moment. I am in constant pain and at the moment, breathing feels as though it is stiff. Like when you don't move your leg for ages, but its down at the bottom of my ribs and it hurts like mad all the time. I don't get much sleep unless I am drugged up on pain killers so I can breathe or taking a sleeping tablet just so I can switch off and forget the troubles of the day. I deal with a lot all at once and I forget to look after myself. But how can one be expected to look after themselves while looking after a 30 year old with the mental age of a 9 year old at times?

I think things do need to change and I know that the change has to come from him, and not me.

Loves
Wendy xx

Back Again...

I understand that the last couple of days I have been absent from my blog. Well, to tell you the truth, I was on a major AFK moment. Not through choice, but through pure circumstance. I had hoped that I wouldn't have lost everything and had to start from scratch, which when it comes to everything I had sorted on here and settled, it is taking way too long to get my computer back to what it was. All because of some RAR files... But I really cannot be bothered to go in to that again and again. I just have to hope that this time, Steve has learned a lesson about being careful as to what he downloads and where he gets it in future.

I had given someone my 32-bit product recovery disc so he could fix his own computer. This moment of kindness was really one thing that scuppered me, as I was unable to create a recovery media from my HDD for the 64-bit OS that I was running originally. So what I wound up with was a laptop with a totally formatted HDD, and no OS to put on to it. Until Tom posted me back my disc, it arrived today and I have never been more thankful to see the postie!

OK maybe I was happy to see him yesterday when he came with my Transformers box set. 15 discs of Transformers cartoons from the 80's. The cartoons I used to watch when I was a youngster. I used to have 4 separate box sets with all the different series, but I think in hindsight this is a better deal after all. It certainly made my day after Thursday night, when my asthma was playing it's game and I needed to go to hospital.

Sadly the paramedic I had on Thursday was the same female that everytime I see her, she insists its not my asthma that is causing my problems, and that my chest was wonderfully clear (so why on earth did the doctor in A and E find a lovely wheeze, worse in my right lung, as well as poor air entry), and she took my SATs, they were on the screen at 93%, but she whipped off the probe and wrote 99%, which I always find really strange. She noticed my own pulse oximeter and asked why I had one. It took all the self control in the world not to come out with a snappy response about using it in some obscene way. As soon as I got to A and E, the ward sister reassessed me herself and made sure that the right OBs were made and she made no mistake on telling the paramedic that she was useless and playing a dangerous game.

A doctor was in to me within the hour and I was closely cared for, my attack settled and I was given some pain relief, as all my muscles felt as though they were screaming with strain and I was exhausted. After a round of nebs and steroids, thankfully I was allowed to go home. I am still fuming however, as every single time we get this female paramedic, she always says its not asthma and I'm fine and then I wind up in such a bad way that it takes the poor doctor longer than it needs to to get me back to normal. I have a feeling she was probably reported by the sister, but I think I will be making my complaint as it was a dangerous game to play and I could have so easily deteriorated to the point of being seriously ill.

Loves
Wendy xx

Wednesday, 9 March 2011

Forms...Forms... Forms...

You would thing that disability would be just one of those things, but I have spent the last 2 weeks filling out so many different kinds of forms for everything. From DLA, registering as disabled, care worker forms, OT. I swear my wrist gets a right work out at the moment, but its just so frustrating working out what exactly to put down and where it needs to go, who do I need to talk to? What do I do next? I think I have lost count on how many times I have had to explain what Brittle Asthma is, how it effects my day to day life and the 17, yes you did read that right, 17 different medications and other things I have to use and the machines and appliances that have become part of my life.

A lot of my time is spent on keeping me well enough to do the next bit. 20 minutes per time for a nebuliser or lining up an amount of pills is a lot to do. I want to get more of normal surroundings, rather than looking at another hospital room, having yet another needle inserted somewhere, or mask put on my face just so that I am able to breathe for a bit longer. At 23, knowing that this is something that cannot be cured, and won't just go away, knowing it will be something that is probably going to get worse with no way out, its the kind of thing you can't un-learn.

I have always looked at things in the best way and always pretended that things didn't bother me, and that I was coping, but that was the wrong approach to it all and it was no wonder that I was always crying when I was on my own, not wanting to admit that things were as bad as they are. I didn't notice the struggles to do simple things like making myself something to eat or drink, not that I wasn't struggling, I just saw it as I had done it so there we go. I hated myself for admitting to either myself or anyone else. I hated it even more having to tell my story to someone as they filled me a form in to explain how my health was and how I felt because of it.

I came back from my appointment somewhat down, maybe I was just smarting because it wasn't easy to admit how I was feeling here. I never ever looked at things in terms of "how sick am I?" or the rest of it, and it did leave me a bit crestfallen to know that I was actually in that state, the pale and exhausted young woman that looks back at me WAS me and I just need to make the best of it, stop running away.

Loves
Wendy xx

Monday, 7 March 2011

Getting the help...

As I got sick with this, one thing no one ever really told me about was getting the help I needed for the things I would love to do, but on my worst days, just cannot do it. Things as simple as just getting up and changing from my PJs to normal clothes (this can and has left me somewhat puffed out), making something to eat or drink or even being able to reach my meds. I never realised how much of a struggle it can be when my asthma just can't or won't play ball. Today was one of my wheezier days, even playing with my boys left me absolutely shattered, sadly we still have to keep separating Hope from the others as he is just too frisky.

In myself, I have been a bit lethargic and was sleeping a lot again, I spent some time after cleaning with Steve, fast asleep again, until my friend Rich came round to see us. Rich is so much happier these days and its nice to see him back to his old self. So I didn't mind being woken, although it was noticed that my clothes were looser and I only brought these PJs last week!!

We also had an assessment from a social worker for my social care. Not too sure what to expect in the coming months, but it could result in some major improvements in my life and how I live. I guess that is all I have to say right now, am very tired and its been a weirdly long day... even though I haven't actually done anything...

Oh and a big THANK YOU to Tom who came to see me yesterday xxxxxx

Loves
Wendy xx

Sunday, 6 March 2011

Feeling Refreshed...

I think sometimes I need to remind myself of what is really going on or I would forget everything and fall down in to my pit of self-pity and depression, which to be honest is one thing that is uncharacteristic of me really. I have always tried my hardest to stay up-beat, which doesn't always mean a gloss over of every emotion, I learned this the hard way really. But when did I ever not do things the hard way?

I think after really opening up and looking objectively at some of my behaviors, I think I allowed myself a bit of clarity of thought and I think that was something I just need sometimes. I just need to rant and say what is really on my mind, rather than painting on a smile and pretending that it doesn't bother me, which it does. If I was honest, I would say it really bugs the hell out of me sometimes. I push people away because I don't want them to feel trapped in to helping me, even though they offer willingly and I am truly TRULY thankful for them for offering, I just know how easy it is to get trapped in to looking after someone and not be able to escape from it. I have been there. Steve has been there. It is a road that is not to be traveled again, or it would destroy those who went there.

I never wanted to destroy anyone's life, or be that catalyst to their own self destruction, if that makes any sense at all. I don't wish for those who are close to me to feel tied down to being this that and the other for me and I certainly don't want to be a burden on society like so many young people these days who don't genuinely try in life. I do try in life, but at the moment it is just catching a break. Sometimes you can, and more often than not, you fall down, but it isn't failure to fall down, but it is if you don't even try getting back up again.

In my life, yes I have seen and been subjected to so many things and have suffered very much because of it. Heck to sink in to self pity and never do anything would be the easy way out. I tried it and all I got was more sadness. So I tried fighting things I couldn't fight, and only got my ass handed to me. Now I am taking the tack of working with myself, those around me and getting the help and support that I need, instead of insisting that I go it alone, which only left me feeling worse about things. It is hard being sick around people, but it is even harder when you keep up a pretense that everything is fine and hunky-dory.

Loves
Wendy xx

Saturday, 5 March 2011

Reminders...

It is uncanny isn't it how something simple like a picture or an old song can evoke all kinds of emotions and memories of things. For me it comes from music, often songs that I heard on the radio or way back when, Kerrang! or other places. These songs make me remember who I was, who I am and I start bouncing around like crazy again. It was great fun, but it was absolutely exhausting once I had finished and sat myself down again for nebs and more rest.

Back when I was a teenager, I was one of those kids who would be found with my headphones and loud punk, metal and other kinds of music. No matter how bad things were, I would always be able to comfort myself with my music and find somewhere safe to hide, usually with loud music and Final Fantasy 7. I could lock myself in my room for hours with my Playstation, my CDs and while away the afternoons from when I was taken out of school. I spent 13 weeks at home that year and during that time, I just wanted to escape from the mundane and boring world of Stafford, being bullied and being scared of my own shadow at home, a hang up from my older brother, but one I managed to work out and I became me again.

I never realised it, but in some ways, I had gone back to that scared and fretful little girl who was again scared of who she was and where she was. I found the music I used to love was such a comfort, and I started picking myself back up again. In some ways, being taken back to that dark and unfriendly place actually brought me back to a more comfortable, confident and happy place.

No matter what I went through in the past, heck even in the present, it never took away who I was. I never stopped being Wendy and I never let anyone beat me before. I never gave up this easily. I am a fighter and tough one at that, I mean, I took on a whole school by myself, admittedly, I didn't have a pretty win, but a win was a win to me. I stood up to some of the meanest and nastiest people and didn't flinch, and I fought against my own flesh and blood to make sure that I was allowed to be free, and I won. Maybe, I was worried that admitting to things would mean that they would win and I would be better off dying somewhere, then I worked out that thinking that way was actually a loss. I let things beat me, not through anything other than not even admitting to the problems in the first place.

Someone very close and special to me gave me a piece of artwork for Christmas, and I read, re-read and it clicked what it meant. "A person who is scared of themselves hides behind a mask." I really was that person who was scared of herself and I wore a mask of "I'm fine, there is nothing wrong" and a painted smile. Only a few people who really knew me really saw through it, one of who, it was almost as if he felt it too. Its weird how me and Nathaniel have that bond, its closer than any friend, lover or anything else could be, and it was always the reason as to why we never would have worked as a couple. We are just way too close in just so many ways. It is like he is the other part of me and its so strange at times.

As for Steve, well there are times, I really wonder if I am worth it for him, I am constantly ill. I sleep all day and am taciturn for another day. I never share how I feel about anything and pretend that things run off my back, but I guess it doesn't always and it was never weak to admit that to anyone. I drag up the past as a way of protecting myself from what happens around me, purely because I just can't understand what is going on sometimes and can't relate to it. I can be very selfish and very cruel when I feel cornered. I like to run away from things and am always beating myself up over my roles in what happened back then. Maybe I do what I do so that I can be blamed for something to justify that I am not worth it and I need to be shouted at.

I guess now it is time that I actually talk about how I feel and the things I cannot do. Ant, his comment that offended me as much as it did and made me feel so bad was that there was no excuse to not have a job. Now at the time, I felt very offended as it was almost as though someone had gone up to someone in a wheelchair and said "There is no reason not to walk" and I guess I should have said something much sooner rather than letting it build up. He did appologise to me and told me he didn't intend to cause that much offense. We hugged, and made up. I felt better but I really have no intention to ever return to Omen Shadow, thinking about it, my health just wouldn't stand up to it anymore.

No, I can't walk too far without running out of puff. Somedays I struggle to get dressed or even bathe myself when I get tired and ill. Small jobs are sometimes difficult and even my drawing can be too difficult. I am always in pain and feel miserable and lonely because of that. And sex, well that doesn't go very far as I feel so unsexy as my body is ravaged by stretch-marks, sagging skin on my breasts and stomach. I almost look like a balloon that was inflated and then deflated. How could anyone want THAT? How could anyone find that attractive? I push Steve away because I am embarrassed by what I look like, how I struggle and I think in some ways, I hope he'll go away so that he can find a beautiful girl with no excess skin or stretch marks. A girl who can go for hours. A girl who doesn't need help with personal care or anything like that.

I have laid myself bare for a change, please read this with no judgements, I just wanted to set myself straight and how I really felt about things as well as having my chance to actually say my piece with no-one to interrupt.

Loves
Wendy xx

Sleep...

I must have been feeling rough, after running around and clearing out the store room again with Steve, I mean really sifting through boxes and cupboards, throwing away the rubbish and generally freshening things up, I didn't expect to lay down and fall asleep like that. I only lay for a moment to get my breath, have a neb and then intended to busy myself with some other small tasks, some artwork I wanted to get done and other things. This was about half 1 in the afternoon.

I woke up again about quarter to 5 wondering how long I had been asleep and was wondering about some things. One of which I was sure I dreamed, but alas I hadn't. Halfway through my nap, I had gotten up, coughed up some green muck, blew my nose and then apparently went in to a rant about how crap my bladder was... I honestly thought I had dreamed it, but Steve told me what I had said, before getting up and well answering the call of nature, curling back up and going back to sleep. I don't think I have been this exhausted in a long time, but between fighting this infection, and everything else that happened this last week. It really didn't ever end and when it all came to a head, I was left a little dejected and in that sort of empty, numb calm and didn't really work out how exactly I had been feeling.

I have an amazing skill in pushing everything down. I can smile and laugh, acting completely normal and healthy, while inside I am screaming and in so much pain, feeling so unwell and just wanting it all to end. It is something I was always told to do, no one likes a pity party and sympathy just doesn't really exist, so I had to learn to deal with things my own way. Admittedly my own way often seems destructive and I turn a lot inward. I still haven't come to terms with a lot of the last year, heck a lot of it just hasn't sunk in. I keep asking myself "Is this really the best I can expect from life now?" then start hating myself for even going there. I suppose all I want is to just work this out and not have to be reminded every day when I start struggling for breath after doing things, waking up on the floor because I was so exhausted, a job or 3 half done and feeling so just angry with everything so that I have to take a tablet at night, just to get some kind of sleep.

I guess I don't want people to feel sorry for me, I just want people to understand that at the moment things are just harder than I admit to.

Loves
Wendy xx

Wednesday, 2 March 2011

O....M......F........G!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

OK, never sit there saying to yourself that it could always be worse... NEVER EVER EVER.... If this week gets any more annoying then I think I may end up going out there and actually doing something to someone that I would later wish to reconsider. Hense why instead, I am taking to my blog and really starting to let loose.

OK so maybe I was in the wrong for saying something over Facebook about the whole ex-band member (yes I have left the band, we decided it was for the best) and then another person got involved and of course only got not even half of the story, stuck their oar in, before actually going out to find out what was really going on (accusing me of doing just THAT of all things... I will not go in to just how hypocritical that really was, but that annoyed me further) and it resulted in me and Ant having a fully fledged screaming match down the phone.

Now I will say now that I respect Ant, he did admit that he was out of line for saying what he said to me and that he wished I'd open up some more. I have made a promise that opening up will be something I will not forget to do again. Its just hard because I don't like admitting that I have a load of shit in my life right now to myself, how the hell does anyone expect me to admit it to other people, but there you go. I think I just get so angry and hate the fact that I just can't catch a break at the moment and hearing that my health is getting worse and there is now not much that can be done about it in a primary care setting (basically it is my specialist's problem now... yeah... OK...) and yes it has gotten worse, yes I am now at that point where I am not going to get better and things just seem to be nose-diving at the moment. I have to be sedated so that I can sleep or I spend half the night crying, in pain, worrying or just generally not being well. I am constantly exhausted and everything hurts.

I can't go to the shops without getting out of puff and needing medicine. Even having a "number 2" can leave me breathless and wheezy. I have lost weight and not even tried to, but I am often so tired that I cannot eat very much at times. So I rely on what sleep I can get, when I am allowed by the guy next door, the housing officer knocking constantly or just general worries about everything else.

I am TRYING. I really am. I push myself everyday to at least do SOME of the housework, and handling everything for everyone. I do my best. I honestly and truly do. I will even have a nebuliser while hoovering if I have to, and have done in the past. Taking it to the loo with me, or using it in the bath. I know there is a buttload worse out there and I don't ever want people to think I believe I am the worst off in the whole wide world and wah wah wah but I am more unwell than I really let people see. I would LOVE to work. I would LOVE to be able to go on holiday without having to take a whole pharmacy of drugs. I would LOVE it if my handbag just contained my address book, my purse and my mobile phone instead of stuff that a Paramedic would carry.

I JUST WANT NORMALITY!
I WANT TO BE 23 YEARS OLD AGAIN!
I WANT TO BE ABLE TO SLEEP AT NIGHT!
I WANT TO NOT BE IN CONSTANT PAIN!

I WANT MY LIFE BACK.... AND I WANT IT NOW!!!

Loves
Wendy xx

Taking a Step Back...

After yesterday and finally getting to the bottom of everything (and I mean EVERYTHING) with Steve and finding out what the hell he was trying to do. He told me about something called "The long game" where you play every angle until the "victim" (for want of a better word) breaks and finds themselves becoming the real them. And that was what Steve was trying to do, he was trying to get me back to who I was. Strong, courageous and taking no bullshit from anyone. It felt good to get back to that person again, OK so I nearly NEARLY punched him for it.

To be honest, I was preparing myself to jump ship and walk away, but what stopped me was finally getting that outcome and everything was dealt with. All of a sudden the game was over. I had won, but it had taken it's toll on me. But you know me, I will bounce back, but I need to rest and recuperate.

I was diagnosed on Monday with an infection in the bottom of both lungs, very phlegmy and exhausted. I wasn't even strong enough to cough up, so I was being left with these solid pellets in my mouth. Walking from the bed to my desk which is less than 4 steps left me breathless and I was finding it hard to keep my SATs over 94%, so I was nebbing just to keep myself breathing and all I wanted to do was sleep and not be in so much pain. Sleep just lately has been hard to come by, from pain and just generally not feeling so well, not helped by a noisy guy next door.

I was walking in to Tesco earlier, and I felt everything go really fuzzy. I was leaning heavily on the trolley and all I wanted was to go to sleep. I had a neb on the bus and had dropped down to 91% (managed to get back up to 96%, neither of which are particularly low, but my doctor said that anything below 94% isn't particularly good, but if after a neb and its still low 90s and the neb hasn't helped then an ambulance should be called straight away). I got home and now all I want to do is bury myself somewhere and not move, but you know what happens as soon as I get comfortable... Hopefully my books and DVDs will come soon and that will really perk me up a bit. Steve's keyboard should be here soon.

Loves
Wendy xx

Tuesday, 1 March 2011

Spring is In the Air...

It is now the birth of the Spring. Even though, you wouldn't know it from the bitter cold still outside, but the trees are beginning to show early buds and the pollen is back. A pet hate of mine. Pollen, it makes my nose runny and my asthma flare up. Even though, my IGE shows that I am of a non-allergenic disposition. It is a bit of a strange one, but it results in my body attacking itself, rather than anything else that comes in. So I end up with all kinds of infections, and most of my energy goes on fighting everything all at once, rather than normal things that a 23 year old would be doing.

This is why I am ALWAYS tired. Coupled in with the fact that my anxiety, OCD and other mental health problems which keep me up at night, so I can't win. I sometimes have to sleep in the day, especially so when I have an infection, so the guy next door being as loud as possible (I can hear the track perfectly, treble, bass, lyrics, EVERYTHING) really doesn't help. It is worse that no one is willing to help us, even though someone is obviously and clearly suffering as a result. Housing officer says that during the day it isn't a problem (I looked it up, it IS), and during the night then we should call the police (we tried once and were told that it wasn't a police matter), and environmental health (who said fill in the diary sheets, which we did, I don't know what Steve did with them though, I think he gave them to our housing officer who promised something would be done, no such luck).

I feel like I have been battling this for so long now and it really is getting to me, I mean I have another chest infection. I know that should be just one of those things that I accept with no qualms, but I am still being made to feel absolutely awful and unable to get the rest I need, which means that this won't clear up very well and will probably carry on a vicious cycle of infection, recovery, further infection. All because I am not permitted the rest I so desperately need. And I am getting very desperate for rest now. My head thumps, my body hurts, I am hot and uncomfortable, I can't breathe properly and I am at the point of tears because Steve was in one for whatever reason, its not my problem, and all I want to do is put my head down, have a good long sleep and wake up feeling much better.

That was just too much to ask really wasn't it?

Loves
Wendy xx

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