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.

Friday, 29 April 2011

Kidney Infection and General Feeling of Ick...

OK so I have been quite absent again which is a sign really of how I have been feeling. I woke up about a week ago with pains in my back, a temp and just generally felt like utter shit frankly. All I did from last Thursday to yesterday was sleep. And I mean really sleep. I had all the classic symptoms of an old adversary, something that made my teenage years frankly the most uncomfortable that one can be when battling this viral infection. I am talking about, of course the teenage nemesis, Glandular Fever.

So I had this not so wonderful combination of Glandular Fever, food poisoning because of a frankly poorly kept kitchen AND I find out to boot that I have a wonderful and somewhat painful kidney infection. The cause of 2 of these problems? Somebody got complacent. AGAIN?! I mean, how many times do I have to get sick before he can LEARN that dirty kitchen = I GET SICK!!! I find it so frustrating at times and in some ways, I wish that we could swap for one whole week and he could actually see first hand what I go through and how he could, if he wanted to, actually take the steps to stop it happening time and again. I guess its up to me to pick up the slack and remind him that it needs doing or I will get really REALLY ill.

So the other day I went out with Penny, I love our outings, they're lovely and they really make me feel less, well contained in my home. I was in a lot of pain and discomfort and kept suffering dizzy spells or that feeling that I was going to be sick. OK so all I have truthfully eaten today was a concoction of random but lovely foods, but there has been nothing else thats really tempted my appetite and because I starved all day, my old friend and demon started to pester me. I remembered the 3 month crash diet that I ended up on because of my appendix and how skinny I was at a measly 7 stone. Maybe a part of me wants to do that all again even though it was killing me. I just felt so vulnerable when it came to my weight recently.

Not helped by the fact that I have barely been able to eat anything. Even a small meal has been too much for my stomach to handle. I feel full or nauseous, and I can't even drink much which is really weird. I have no reason as to why I just don't feel like eating. I just didn't feel up to it.

Maybe this will pass?

Loves
Wendy xx 

Friday, 22 April 2011

Adapting...

I never realised when I was there how I had become accustomed to living, eating, sleeping and doing everything else in just the one room. Until we moved in to our new flat. Where as before when I was angry, I had no where I could just go and BE angry and burn it out. Now I have a bedroom or a living room so I can be alone if I need to be. I don't feel anywhere near as gross for eating and sleeping in the same place.

That isn't to say that having separate rooms to sleep and live isn't without it's issues. One of which has hit me particularly as it is something that really only affects me to any real extent is the fact that I have my 2 nebuliser compressors, a Micro-Air which is great but eats batteries and a fantastic Freeway Freedom which is tough and is just a great machine. I had to think long and hard about things and finally made my decision, I was going to need a new compressor for the bedroom. After some deliberation, research and looking at space, I made my decision and have ordered myself a Medix AC1000. A small, but powerful little gadget which is supposed to do 3ml in 10 minutes, which when I just want my neb and to sleep, is a relief.

I have been known to sleep my way through a neb before now, usually by the point, I will admit, I should probably be heading towards a hospital, but my stubborn nature makes me want to fight it out until I can't anymore which is my biggest flaw. It isn't just my asthma that I fight. I fight against everything because, heaven forbid, should I be considered weak or unable, I just want to prove to everyone I can. Call it my nature or a dangerous game to play with myself.

Today, everything caught up with me. All the running around, cleaning, decorating, Everything. All I wanted to do again was sleep. So I slept all morning in the living room (after being chucked out of bed so the bedding got a wash) on the sofa. I actually didn't intend to fall asleep, it just sort of happened. I woke up and turned off the TV I'd ignored and went back to sleep.

Yeah, that was the highlight of my day, sad really, BUT that is a bank holiday for you.

Loves
Wendy xx

Thursday, 21 April 2011

Quietness...

So here I am, back in a suburban area, in a small flat with everything starting to improve. For the most part anyway. I notice my blog has been a bit quiet lately, but then again, I have been very quiet these last few days, barely interested in anything, this is something I know isn't a good thing. I think that when I start talking about things in therapy that have really been getting to me, I tend to focus on the physical tasks and I clam up emotionally. I've been spending my days in a kind of haze of get up, do the same things, nag about the same poorly done chores before resigning myself to doing it all myself, and then I wind up exhausted and feeling physically tired, but emotionally, kind of numb.

Maybe it is the fact that I have been forced to accept that nothing has really changed in my life from one home to the other. I am still sick. Steve still complains about being asked to do ANYTHING around here. I am still feeling empty and far away from who I used to be. I miss my old confidence more than anything I think and I can't learn to like the person looking back at me in the mirror. The tired, dead eyes and the beaten down expression. I should have been happy about a lot of things but I was never allowed to actually enjoy anything. I can't seem to explain how I feel even to myself some days.

I read on the internet a lot of things, but just lately, I have noticed, along with a few others who shall remain nameless, the number of people who are complaining about how "hard" they have it and how they WANT certain medications. Why? What purpose could that really have served them at all? I mean, why do these people actually ENJOY being on medication and dread being told that there is nothing wrong. For me that would be a blessing. It really would. There are so many people out there who will tell me that I "Don't look sick" or that they "are in so much worse health" and yet they're not the ones who have been feeling exhausted, having to use a nebuliser or having to take cocktails of tablets. If anyone wants this for a life, honestly, they can have it and I can go back to being a normal 23 year old with normal problems.

Sorry about the ranting, but just lately I feel like I had to bottle so much up. I just didn't want to upset people by actually allowing them to see how I feel so I paint on a smile and pretend that everything is OK. I have been so quiet because I knew I would wind up pouring out a huge emotional tirade and then wind up deleting it anyway so that no one could see that I was actually feeling pretty upset, frustrated and angry this week.

Loves
Wendy xx

Monday, 18 April 2011

Therapy, Stuff and more randomness...

I hadn't posted for a few days, mainly because i was trying to work out what was on my mind. Never an easy thing to work out at the best of times, but just lately, I have been lost in a confusion and muddle in trying to work out everything on the fly rather than meticulously planning everything which is more my style. It has been nearly a week since I last opened up what was going on in my head.

I have started Psychotherapy with the local NHS Mental Health Trust. Its been facinating because on the one hand, I can look at where I go wrong and what not to do in the future, but on the other hand, I have been able to finally confront what made me go in to those habits in the first place. Which means then I am going to become able to more to not carry those on. In particular the habit of self criticism and letting problems get on top of me. I am letting myself cope better and letting myself to keep on track. Instead of letting myself fall at the next hurdle.

In myself I feel as though I can get there and I can overcome what is really bothering me and work out where those emotions were born. I know right away that this process isn't going to be either easy nor fun, but I know it is needed in order for me to move on and embrace life for what it is, rather than sinking in to a mire of self pity and sympathy seeking. None of which are in my character to do. My character is generally strong and hard-working, unyielding and happy.

The next few weeks or months are going to be the key to where I go next and what I do next. I am learning slowly to accept my limitations, not as barriers but as something to work around.

Loves
Wendy xx

Tuesday, 12 April 2011

It's Coming Together FINALLY!

After 2 very stressful weeks of moving, organising and coordinating the new place is finally taking shape and starting to look like a home. We have received a cooker and fridge freezer with the help of Penny who has been absolutely amazing in helping me out so much and I really cannot thank her enough. The bedroom actually LOOKS like somewhere to chill out, sleep and let the day pass me by with no problems and the living room has become a shrine to my Final Fantasy collection that is going to take up a WHOLE room!

I'm getting my netbook back so I can use it on the occasions that I am going to be in hospital or other times when a small computer will back up my big one. I am actually looking forward to that because as much as I love my laptop, there are times, I must say that it is a pain carrying it around with me. So last night I was busying myself with setting up and customising it to my tastes.

I was up really REALLY early this morning. I think it was either the fact that I was really looking forward to the postie turning up, with some parcels on order, or was it the fact that my asthma decided that at half 6 that it was time I got up and got a neb. I was not impressed. So I crawled out of the scratcher, padded my way to the living room with my DS and sat with my Freeway for a bit. Steve crawled out of bed not long after I had, so we both hung out and did our usual morning stuff. Something was bugging me. I was bothered by the shelves that needed re-putting up, holes needed making deeper. I know they say 3rd time lucky, for me it turned out to be 16th or so.

Lee came to see us as he always does on a Tuesday. He looked over the letter we got about the extra money and he explained it to us, well more to Steve than me as to WHY this extra money was coming in and WHO it was for and WHY that was. I think he finally got the picture and started to understand as to why I was getting an extra £58 a week as part of my ESA (so I thought it was DLA, long story short, that is still processing and the decision is still pending). I think having that explained by someone who not only knew what he was talking about but had probably had to deal with disgruntled partners of other people in the same position so I think Steve took it a little better.

That extra £58 a week is made up of Extra money because I am in the Support Group, which means that I have been found to be so unwell that I am not able to work. It also means I don't need to send in doctor's notes or have any medical assessments. It is a LOAD off my mind. I was terrified that I was going to lose my ESA and be expected to go back in to work.

Loves
Wendy xx

Sunday, 10 April 2011

Calming my Mind...

Tomorrow, I start my psychotherapy and I am absolutely bricking it. It is going to be sessions where I am going to be talking about some personal issues and dragging up parts of my life that I really would love to gloss over and pretend they weren't there, but they have to be dealt with. As much as I really, REALLY would rather ignore it and go with something else, I can't. Not if I want to sleep at night and get rid of the urges to harm myself. I want to get off anti-psychotic medications and I definitely want off my Sertraline as it is not doing me much good in the long run. I know I have about as much chance of that happening than seeing Sephiroth riding past my window on a luminous yellow chocobo. OK so that was a hilarious image!

I got through to Steve in the end that he couldn't act the way he has been just lately. He said he wants equality in the relationship so I explained to him that as I am sick and he isn't then chances are that won't happen so he needs to just plain and simple, DEAL with it. I am not going to let anyone get to me like that again, it was enough that I had let someone in like that before and I got as hurt as I did back then.

Today, my lungs have been the worst they have been in a while. Feeling tired and short of breath all day and having to use my neb more often than I would have liked. I decided at one point to check over my SATs as Dr Pike had asked me to keep a close eye on things especially when I was feeling bad. Measuring every so often when I feel well to find out what my average was, when I was having an attack and afterwards while returning to normal. I was on the low side and prepared myself to need to go in. I nebbed and had some extra pred (as Dr Pike recommended) and after a sleep, I felt pretty OK.

I spent most of today sleeping or nebbing, not really fancying eating much. I did manage to clean the kitchen this morning but I was pushing myself way too hard again and I was exhausted by the time I'd finished. I played on my DS for a while, I found a game that took me back to my childhood. I used to have a game on the SNES called "Baby Mario" where you played as Yoshi and you carried baby versions of the characters on your back. You could inhale enemies and then lay an egg on demand. I forgot this, then when I saw it, I couldn't stop myself laughing so much!! Yoshi's Island DS is definitely a game I want to keep for a while!

Loves
Wendy xx

Saturday, 9 April 2011

I feel so Guilty.

Why is it that whenever I am given  at least one little thing to make my life just that little easier, I am made to feel so incredibly guilty, almost as though I ask for any of this or that I am some how using it as some kind of oneupmanship. Which I'm not. I am just making the best of a bad situation and claiming what I am entitled to in order to clear the bills and make sure that we don't end up in the same situations we were in back at the old place.

My ESA has been increased, but only in my part and not Steve's. I have been awarded a couple of extra components because of my disability and limited capability for work. This is a separate thing from our usual ESA payments and totals an extra £53 for me each week. Steve is upset as it isn't for him and decided that he was going to sulk, strop and storm around. Being intimidating and making me feel bad because I am entitled to a little bit of extra money. Money I can use to pay extra bills, pay off MY debts and generally replace everything I had to sell because of him and finish redecorating our home. Heck with this extra, I can sort out a washing machine and pay off Penny for her generous help in getting a fridge and cooker for our flat. As well as paying the cable bill and making sure that there is always food in the cupboards, money on both meters and phones without the CEX runs and having to scrimp to make ends meet.

Where was I wrong in all of this? Why did he go from nice to douche with the opening of an envelope?

I am really REALLY hoping that this is a one off.

Loves
Wendy xx

Monday, 4 April 2011

Moved Home...


I know I have been away for a few days, but for once that wasn't because of my health. We were moving from Knowle Close, to Stanley Close.

OK so moving hasn’t been the easiest of processes, even though I have done it now about 3 times in the last 3 years, twice with Steve. Things are really beginning to take shape and the place is really starting to resemble a home rather than a building site. Today we went to Wilko and got EVERYTHING we could think that we would need from curtain track loops to borders for the walls, a frame for my Advent Children poster and various other things that are really about to turn this place in to OUR home. OUR sanctuary and OUR haven.
I am still having my clumsy moments admittedly. This morning, I went to sit on a plastic storage crate. Up turned they can take my weight and have proven to be rather comfortable seating, but this time, I heard this ear-splitting CRUNCH and found myself crushed in to this crate! Of course I was laughing my head off at this, but it taught me a lesson. DON’T SIT ON THE LID OF A CRATE!! Luckily no one was hurt and nothing other than the lid to this crate was broken. 

I brought some wall shelves today. Instead of taking up an ENTIRE bookcase with my FF7 toy collection, I decided that it would be a lot more effective and a much better idea if I used some shelves and that way, I could display them to their best effect, admittedly probably without the fairy lights, unless of course I work out a way of doing it, although I did have an idea with the lights and the bed, but more on that later.

I have managed to source a sofa from a gentleman named Clive via Freegle. Which is a neutral cream colour, perfect for our neutral magnolia living room which will have a red and cream border, looking rather stylish if I do say so myself. The bedroom is a lovely China blue colour, very healing and very calming, perfect for us. I found a pretty blue and silver border for that and a yellowy- cream border for the hallway. It is mostly calm, pastel colours, but to be honest, in this kind of place, the last thing you want is to go mental and use colours that are in your face. That just looks tacky and wrong. I want a calming and soothing effect in here, neutral woods, silver metals, modern and stylish, yet with a hint of our personalities coming through.

1st April.

Today, I spent mostly asleep, it has to be said. I was absolutely exhausted by morning and when it came to going to get some more work done, I just couldn’t move, my head hurt too much and my ability to move was nil. So I slept until about 3, after lunch and a Duo-decim session. Yes... Its out finally and I have it and it is BRILLIANT!! You get to play as my favourite Final Fantasy girls, Yuna, Tifa and the spirited Lightning.
When I did finally get there, I was occupied with the rather interesting (and I mean that in many different contexts, task of putting up the 4 wooden shelves that I had brought for my Final Fantasy collection. This wasn’t the most simple of feats. Considering that in my 23 years of life, I have never EVER used an electric drill before. So it was a rapid learning curve. Funnily enough, I managed to fit the shelves with only a couple of problems, but it came together quite quick so I was, and still am very pleased with myself. The flooring in the bedroom is starting to take shape and it looks fab!
My OCD finally worked in my favour as well as I managed to put up 4 shelves, level and without any help or tools. Now for a first timer, I can honestly say, I didn’t do badly, but I am my Dad’s daughter and I have inherited his ability in D.I.Y, but without his half hearted attitude. Or the gratuitous use of silicone or filler... I swear number 1 Cull Avenue was held together with a mix of superglue, silicone sealant and polyfiller. Living there, you definitely develop a knowledge of tools and D.I.Y. Admittedly they had to ban me from raiding the tool box as I would just take everything apart given half a chance! I never did grow out of that.

2nd April.

I woke up quite early and had that feeling of excitement as I helped Steve finish depersonalising the old flat, before moving over to the new one. It was the first night we stayed here.

TODAY:

Today we had the boiler and the internet sorted out so everything is now up and running and we are settling in to our new and awesome new flat.

Loves
Wendy xx

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