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.

Saturday, 22 August 2015

From Oddworld with Love

Finally! I got off my backside and re-did the banner for the blog! Well, all I really had to do was change the name after the title but it is now done. Gradually moving everything over to Jordan, just as I did when I changed my name the first time. I am happier now that my name has changed as I feel like it's something of a fresh start as it were. No, it doesn't change much of my situation but it makes me feel closer to my family again and that is what I really wanted the most after all. It does still feel strange but its like when I was getting used to writing Bostock instead of Fullard. Its a bit of a habitual thing and when I get in to the swing of it, that's when I will do what comes naturally.

I guess that is kind of what life is about in a way, getting used to new things and it is good to change a situation to what works best for you.

Don't you just hate those days when you really feel like you've been dragged up from the grave? I have been feeling like this for a few days (since finishing my last course of antibiotics) and well, I feel really rough! See this always happens, I go on a course of antibiotics (usually either Augmentin + Clarithromycin/ Levofloxacin) for a while and after a week or so, things start shifting. The problems begin when I finish the course. For the first couple of days everything is OK and I don't feel too rough but by the end of the week its like being back at the beginning again! It's really frustrating and its like never getting off of the endless treadmill of getting sick, get a little better, get really sick again. Doesn't help that the neighbour and his dance music was making me miserable as well, although the last few days have been quieter (apart from work being done but I can't grumble too much about that kind of thing after all) which has been appreciated.

I've been giving my poor little Bumble-baby extra cuddles and affection recently since he lost his brother. He has been really shy since and every time the music starts, the poor little boy keeps crying because it frightens him. Its a shame because he really is missing Tigger and I can tell it bothers him quite a lot. I have been giving him more attention and feeding more greens to everyone (including myself) which has been a nice change. The cute thing about today was when I was going to the shop, I opened the back door as usual and got a wheeking to say "NOO!! Don't leave us!!" from Bumble and when I returned I treated everyone to some green pepper (yes, they LOVE it) and I think I was forgiven. Although I am a bit concerned that Bumble is getting really clingy towards me, it reminds me why I had to get Patch a cage-mate because he was getting stressed and lonely (then again that time he spent away from me didn't help, Patch was always a bit of a Momma's boy). Today I let Loki (the softest bunny I have ever met) and Bumble have some floor time together. I wasn't testing to see if they could be bonded because housing a guinea pig and a rabbit together is about as advisable as keeping your child in a tank of piranhas (being a lot bigger, the rabbit tends to dominate the guinea pig and bully them out of food, kick them across the cage or peeing on them) but because they both looked like they wanted to come out and play. 

It was quite funny to watch them playing together, although I got an inkling that Loki is scared of Bumble despite the fact he is so much smaller. Although there was no fights or aggression between the two which was a relief for me. I also had a moment where I got to cuddle with Loki who was lying in my arms like a little baby (so cute!) and letting me stroke his paws softly. There are times where Loki has driven us mad (bar biting mainly) but hes a nice bun really. Very sweet and loving.

Its weird, he's been gone for a long time, but out of all the pigs I have ever had, Patch is the one who I had the closest bond with, Hope and Daj were joint second I think. When we first met, I had just lost one of my hamsters and I was in a bit of a mess because of stuff going on at home. I needed something to hold on to and love, and love me back. Zeke was a sweet hammie for the time I had him but he wasn't really the "pick up and stroke" kind of pet that I like. I went in to the shop and he was the last guinea pig. No one wanted him because he was a "Rex" breed rather than a "Satin". When I saw him, I loved him right away. We were both lonely and both needed someone to take care of us. We had each other. When I used to come home from College, I would come in to the entry (back when I had my old place and I lived in an attic) and I would get up the first stairs and I would hear him wheek. Getting louder as I went through the door and up the 2nd lot of stairs. Loudest when I was standing on the small landing between my room and bathroom. It was nice to have someone happy to say "Welcome home!"

I've been trying to keep my mind off things though. Maybe its been because I feel lousy that I have wanted to game more and more. I tend to like to game when I have been feeling unwell because it acts as a distraction. I am not running away from my issues by any stretch of the imagination, but by offering myself a way of not thinking about it, I can clear my head and keep it from becoming overwhelmed by frustration. Sometimes I watch films. Sometimes I draw. Other times, I write or come up with more ideas for stuff. When I do chose to play games though, I find that a game that is enveloping and imaginative will keep me occupied for several hours at a time. It's even better when they remake and revive something nostalgic. If you follow me on Facebook or Steam, you'll know that I treated myself to "Oddworld: New 'n' Tasty", a ground up remake of the PSX classic "Oddworld: Abe's Odyssey". 

The whole premise of the original game was to lead Abe and his friends from a meat factory, get ancient blessings from the local wild  life, oh and fart on command (as a kid, that was the funniest thing about the game). Rediscovered again, it was like being a kid again and I am enjoying it. Although the screams of "I SAID JUMP YOU BLUE BASTARD!!" have been a bit of fun for anyone watching and having to master the gamespeak again (annoyingly trying NOT to make a load of mudokens follow you through electric fences or meat saws). The original games were tough and they didn't spare that to make the new version, one thing I am thankful about really as one thing I liked about the original (as well as the farting and the later game's new skill of fart possession ("No other game has it, no other game wants it") and possessing other creatures as well as Sligs) was the fact that it was not an easy game. If you wanted that "good" ending, you had to really work at it! 

I just hope that they do the same for "Abe's Exodus" which was the spin off of Abe. The original "Oddworld Quintology" was centred around Abe's Odyssey, Munch's Odyssey (which didn't do so well), Stranger's Wrath and a 4th game which never came out (probably owing to the catastrophic failure of Munch). They are making a remake of the other Abe game and I for one will be looking forward to more fun on "Oddworld".

Loves
Wendy xx

Tuesday, 11 August 2015

Belief?

Ever have one of those weekends where everything just seems to be stacked against you? I kind of feel that way at the moment as I have had a really rough infection which seems to be getting more and more gunky and I am just getting more and more exhausted as a result. It isn't helped when I have to put up with things that others are doing. The only problem with living in flats and underneath another is that there are bound to be times when we don't see eye to eye. It's not a bad thing, its only natural that sometimes we can do things that (without even knowing sometimes) that get on each other's nerves. Conflicting lifestyles and worldviews can be an issue and it is often one that is hard to deal with diplomatically. After all, one person may think that music we enjoy is "that bloody noise" and no party is right or wrong in that. I just wish sometimes people would understand and think about how their actions impact on others.

It's been a bit rough over the weekend because I have had two days running where I just want to sleep and a lot of my medication which is great for pain also has that kind of sleepy side effect (which when I can't sleep because people are playing music is sheer torture) so I can't really take it during the day. The result of this is that I am in a lot of pain and irritable because I am in pain and I can't even do what I should be able to because of the side effects and sleepiness. It can be a bit of a cycle and it gets me down so much at times because I really want to sleep and get better but not everyone sleeps during the day. I totally respect other people's right to do as they please and live the lives they want as long as my own rights are respected at the same time really. It does work both ways and I have always encouraged people to speak to me when they have a problem and then we can come to a compromise and not be at loggerheads. Arguing with people is a massive waste of time and energy. Sadly the stress of the situation was all too much for one of my guinea pigs and despite everything, the poor little guy didn't make it. I was gutted because I watched as his brother was trying to nudge him awake and I couldn't explain what happened as he couldn't have understood.

With the way my condition varies from day to day (some days I can be well and able to survive all day without having a nap or a lot of medication, some days I have to take more medication and am very easy to tire out) and often when I get a flare up like I have been having over the last few days itt can be harder work to just do simple things like walking around my flat or even going to the toilet and back. The problem is that even on my bad days, I do have to try and push through it and I try. I really do try. Even if its just a small win where I walked from one room to the next, its something I can say "Yeah, I did that myself".

I am actually thinking of going in to "Vlogging" or video blogs, as well as a written blog on my progress as things are starting to change and to be honest, I want to watch it go from what it is now to what it could be in a years time, for example because I want to see how I got from one situation to making things work for me again. It feels nice to be back behind a camera (cables and leads all over, different ports, types of cable etc) and I feel more like the Wendy I was. Maybe that person can still come back because she is still here and still giving me a kick up the backside to get moving. OK so the path ahead does still feel uneasy beneath my feet and I am scared that I am just going to fall down at a hurdle and not be able to claw my way back up. A  natural worry for someone like me so I hear, especially when they have already tried and endured so much and yet to keep coming back and saying "OK, that didn't work. What next?" Maybe its a case of where there is determination, there is hope. Maybe that's what I have to believe in for now.

I think its hard having to do all this again and again, being in a hospital and then having every test you've been subjected to before repeated over until you just want to scream! Each time someone new comes in, they have to redo everything and its like seeing a new (or old) consultant is like starting again from square one and that in itself is unbelievably frustrating because its like all those years of testing, jumping through all the hoops and doing everything they said day by day. I know its not going to be easy but it has to be better than how things are now and I have to believe that eventually I can at least get back some quality of life. I just need to believe in myself and not feel like I'm being set up for a fall here. I have had too many setbacks and too many times where I have almost given up completely and I think that part of me is scared of failing which means a bigger failure for not trying in the first place (if that made any sense).

I hope I am ready for this.

Loves
Wendy xx

Tuesday, 4 August 2015

Leap of Faith?

It's been a bit of a puzzling month with a load of appointments, some were booked ages ago when July was there in the distance somewhere, others were a bit of a last minute thing. The appointment I was stressing over was the appointment at Heartlands Hospital. When I last went in to the Alex, I was told that in no uncertain terms that basically I was going to die. This really messed with my head and I went through a lot of emotions and in effect I had been grieving for the life I could have had. To have that debunked and told that although there has been scarring in my lungs for a while, this was probably more bronchial changes rather than IPF so that definitely took a lot of pressure off both myself and my family (including my friends). The Alex will have a lot to stand up against when I am finished with them because of the physical harm they caused (not to mention the mental strain this put on me over the last 6 months or so).

To be honest, once I got over the initial shock, I was so happy again, everything was bright everyone was happier. Unless you have carried such a thing around with you, you have no idea how difficult it is to have a death sentence hanging over your head or only ever feeling crappy at best. I want to rebuild my life again and its the best thing knowing that there is a future for me. I have a future.

The main thing I have had to take away from this all is that I have had yet more assurance that what I am dealing with IS asthma, it is brittle and is probably going to have some effect over my life for as long as that is. I'm not ready to give up and I think my conviction and genuine wanting to set things right and get things back on track was obvious to anyone who could see. Maybe I expected too much from the initial consultation. Maybe I just want to get better so much that sometimes I wonder if that longing is only setting me up for a fall. A pred detox could be fantastic move because it would mean that we could move on to treating the worst of my symptoms (and what causes them). Its suspected that the worst of my problems stems from the spasm of my airways. Parts of my airway are damaged and I colonised Pseudomonas last winter which really didn't help me at all. If we can get those to stop or at least slow down a bit, I may have a chance of more of a quality of life. I may never be pred free or completely off o2 but as the nurse and doctor assured both me and my mum, if anyone is going to get me halfway back up that mountain, it is Dr Mansur and (as understandably hard as it is) I have to trust him and let him help me and I need to help myself as well.

Unlike previous attempts to do steroid detox, we are backing this one up with objective evidence, close watch of my peak flows and lung function and putting something else there instead. Something less likely to have horrific side effects (my weight is the one I am most worried about, but hey, I'm a woman after all) and I am willing to try anything at this point to be able to not be in pain or gasp for breath all the time. It's a shame we can't fix my back or my joints or I would be even as bold to try and get out of the chair. Maybe one day we will get there but for now, I need to focus myself on things I can actually achieve and work towards them.

What I want to achieve is a more comfortable way of living, it'd be lovely to sleep through the night and not wake up to chest tightness, wheezing and chest infections. I want to make a future with the man I love. I'm starting to believe in that being possible. And the people who know me know that I won't settle for what I can't believe in. The next month or so is probably going to be testing and hard work with appointments to do with my teeth mainly. Basically my wisdom teeth need to get gone and I need the tooth I broke headbutting an oxygen cylinder in the night (not one of my brightest ideas but I was asleep!), not to mention finding a week where I can go and sit and do nothing in Heartlands (a week away from home in a strange hospital in a strange town, I have my reservations but I am going to fight through them and get this over with. At least then it's done, dusted and doesn't have to be done again and again (she says) and hopefully, unlike the last few times I have been in hospital, I will come out having achieved something rather than being left to withdraw and nothing done with it (which the Alex seem to take great pleasure in doing to save a little bit of cash)).

I guess my head will be buzzing over with questions and chomping at the bit to get past it all and hopefully embrace a brigher, less wheezy future. Oh and if I could shift this chest infection I have had now for some time, that would be brilliant as well. I don't know what I feel about the whole thing and some days I am wondering if it really is just me losing my marbles (although I often wonder if I had them to begin with!) or is there even going to be a way we can work around this. If we can work around it, it them poses the serious questions as to why this was never done in the first place and what kind of long term effect has this had on my body and what will put that right? If it even can be put right. I am hoping for some answers to the huge questions and concerns in my mind and I guess maybe I am also trying to have low expectations because that way I can't be too disappointed again.

It's a heck of a leap of faith isn't it?

Loves
Wendy xx

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