For life's little ups and downs.
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.
I'll flap my broken wings and erase it all someday... You'll see.
Sunday, 28 August 2011
The worst of this has been something I have had since I was 16 or 17. I had been really ill for a few weeks and we didn't know what it was. I wasn't keeping food down and I was in constant pain. I was fevered and shivering, even in the middle of that summer. I had just moved out of my mothers home and in to that of my first boyfriend. I remember one morning, I was asleep and suddenly I had felt this sharp, ripping pain in the left side of my hip. I had whimpered and grabbed hold of the poor lad and the next day was taken to hospital. 3 days later and a continuous saline drip and it was found that the cause of my problems had been a ruptured ovarian cyst, but there had been some smaller and less twitchy ones left. I was told by the gynecologist that I had PCOS. To the layman, this means that I have benign cysts that grow quite randomly on my ovaries.
Recently my hormones went again haywire and I was going loopy. I had more pain again, this time in the right hand side of my pelvis (Appendicitis can officially be ruled out as the second "Cyst" that I had wasn't found to be the complete cause of my problems that winter, but my appendix had been the main culprit) and again I feel full after barely touching a meal. This will probably resolve itself, but as soon as I see a gynecologist the better I think, although we have been down this route a few times and we always decided to watch and wait, but this would be the 3rd one in a year now so maybe its time that I said goodbye to that ovary. But I really don't know if I am ready for that kind of thing yet.
Another of my problems that has started to rear its head is the OCD. I hate my OCD at the best of times, but I rarely ever talk about how it has affected me over the last year or so. I think its because of everything else pushing it back, such as the numbness of my legs from my damaged spine, the problems with breathing and the fact that anything with lactose in there is a sure fire way of making me go to the loo so often that I feel drained and exhausted and falling off a toilet in town is really not an avenue I wish to go down again.
I think theres definitely something bothering my body at the moment. I seem to cough for hours and bring up a pea sized amount of junk. Nebs help, but not for long at times so I have a really sneaking suspicion that soon a kidnapping may end up in the offing, although I am hoping beyond hope it never happens. Besides I have a keychain I want to make!!
Wednesday, 24 August 2011
It was surreal to watch these young people who are only a bit younger than myself and Tom, but they were acting like overgrown toddlers. These were people who had barely learned how to cook a nutritious meal for themselves and probably intended to join the vast number of people living on Job Seekers Allowance, not because they need to, but because they WANT to and they think that "I don't want to" means "I don't have to". I actually looked in to how much you get on Job Seekers (I myself have lived on it before and am not ashamed to admit it) and why it is so little.
For a single person between 18-24 years of age are (according to Directgov) a measly £53.45 per week, whereas my partner Tom who claims Carers Allowance, because he spends 37 hours a week caring for me, recieves £53.90 a week and was told that he would not have enough money to live on so was told to claim income support which leaves him with what he would have usually got in his Job Seekers.
This lead me to ask why the rates for Disabled People and their carers are so much higher than those who are looking for a job. I will admit it didn't seem all that fair to me. The idea behind this is that those who are only unemployed because they don't have a job (or in some cases the drive to look for work) are given just the basic of basic living costs and as few luxuries as possible so that they are given an incentive to look for and maintain employment. I know in the recession this has been easier said than done, this is why I struggled to find work when I was fit to work. I never wanted to be unemployed by choice, OK now it is a very different ballgame and right now it just isn't possible for me to find and keep a job due to my severe health problems. It is hard to admit this for a 23 year old, but I know I am by no means the worst off nor am I the first or only person to have a health condition.
As the Summer dies down, and the Autumn is starting to come in (it is dark out now and it is only 20:49) I am reminded that soon my hardest seasons is about to dawn upon me. Over the Winter, I am probably likely to have more problems with my chest, coughs, colds, flu and of course my oldest "friends" pneumonia and bronchitis. Winter is always of particular risk to me and I have spent my last 2 birthdays being so unwell I was unable to enjoy myself in a way that a 22 and 23 year old lady should on her birthday. I am hoping this year will be better and I will enjoy my birthday this year, this time without having the sadness of wondering if this was my last time, or would my last attack be the one that took me. It wasn't a happy thought and I often would get upset as I was becoming very weak and I would cry all day about the fact that I was getting to levels of weakness that I had never encountered before.
I wasn't even allowed to recover because of personal and accommodation problems so I was feeling even worse and my depression deepened and now looking back, I realise that I just needed to get to a place where a good night sleep was a given and not a luxury given at the mercy of the person who lived next door. I am happy that I now have a partner who does care for me, with no strings attached and I am happy that Tom gets Carers Allowance for me, as he really deserves it. This is a guy who comes to me, no matter what and makes sure that I am safe, comfortable and very much loved. I can go in to hospital now without being shouted at (the hospital is no where near as scary now, even the nurses have noticed that I am a hell of a lot calmer) when I come home.
I am not afraid of my illness and the things that that had meant to me. I can now go on and learn to find my own destiny and I really do intend on getting there.
More about FF 7
I remember when I used to watch my older brother playing an import copy of FF7 on our old original Playstation. This was back when I was about 10 or 11 years old. I remember being fascinated with what I was watching so when I finally got the chance to play, it goes without saying that I was chomping at the bit. Especially when my mother brought the family a copy of the game, which went missing shortly after my brother left home (we all know what happened there don't we) but it was brought for me later on. I still have my original "Platinum" copy and it has traveled all over the place with me.
My toy collection began back before my 20th birthday when my then boyfriend brought me my first ever figurine. A Final Fantasy 7: Advent Children Sephiroth. Its probably safe to say that it is my favourite, the particular reason for that being that is that this particular figure was my first ever, little did I know that after a while it would be joined by the rest of the Advent Children range, plus DVDs, books, posters and many other curious objects that have become part of my home and every day life. I curate this collection with a lot of care and attention to detail and pieces such as the Bahamut Sin and Shera Airship (along with a shadow creeper) that were donated by a friend are particularly popular with visitors along with the model of Cloud on top of his trademark Fenrir Motorbike. A more recent purchase, but one that I am particularly impressed with. It takes pride of place upon my shelf above the rest of the collection.
Of course, I never got in to my collecting until I moved to Ivor Road, where for the short time I was there, I was forever ordering models off the internet or visiting Forbidden Planet with Cat. My collection continued to grow for some time, but when I became very sick I was sidelined a bit. But when I had passed my 1st year of my HND, I rewarded myself with a few new pieces. Including my Kingdom Hearts Sephiroth with articulated wing and the cold cast resin Sephiroth which was a bit of a steal really. I remember when it came in the post and I was watching out the window! I was pleased as punch when the doorbell rang and this delicate model was delivered.
The Static Arts Sephiroth was a different story all together, but either way, I walked out of it with a bargain, a fabulous model and an anecdote to go with. I had ordered it off Ebay on the day the model was released by Square Enix. The going rate for it in the UK, even if ordered direct was going to be something mad like £250, well I am not sure if that is still the case, but back then it was certainly the going rate. Either way I wasn't going to pay that much for it so decided to have a look on Ebay where a seller in the States was selling one for £89.99 + £30 shipping. I checked the authenticity and as soon as I was happy, I hit "Buy It Now!" and 6 weeks later, I received a letter from Parcel Force saying that I needed to pay £20 for the model to be allowed to pass through customs. After the hassle and many phonecalls to the depot, we managed to arrange the payment and the next day, I was delighted to finally receive the model that I had been waiting for, and drooling over the photos of the prototype on the Square Enix Website. In total, I think I payed just under £150 for something that was originally going to cost a hundred pounds more than that, so I was thrilled to bits with my purchase, and my bargain. My keen eye for a bargain didn't stop there either.
Not long after that purchase, I was browsing Ebay, as I do and I happened to spot an Advent Children Sculpture Arts Sephiroth figurine with a bid price of £30 with I think it was something like 30 mins left on the clock. I had a look at the auction and read as to why it had been so cheap. There had been some slight damage to the mounting pieces, which to me was a simple fix with a dab of superglue, and the patience to sit and hold it in place while the glue set. I was bowled over by the piece and was happy to accept that a repair would be needed. So I snapped it up and waited for 30 minutes to see if I had won. I was delighted when I got that email saying that it was now mine and I had to pay. Which I did without delay.
A couple of days later, a Royal Mail van was outside the building and I remember saying to my ex that it was too big to be for us, so nearly jumped a foot in the air when the doorbell rang and I received the large box. Upon opening it and tracking down the superglue, I repaired the model promptly and checked the resale of it. I was astounded that now it had been repaired and restored to its former glory, I had paid £30 for something that should have been £200- £250. Although I vow that I would never let any of my collection go, for any thing. They just mean so much to me.
After that, I didn't get any more collectables for a good 18 months. I didn't mind of course and understood that bills and other things were more important than splashing the cash on things we could scarcely afford. But as soon as I moved to Stanley Close, my collectors instinct (and my DLA) became instrumental to completing my collection and even getting the Dissidia models. Dissidia was a more recent venture to celebrate the 20th Anniversary of the Final Fantasy franchise, and I think it was well thought out and well planned. I remember when I got my first Dissidia game, I was bouncing around shrieking "DISSI, DISSI, DISSI!!" for about a week afterwards and really enjoyed the gameplay. But it peaked my curious nature and I started to wonder about the other heroes and villains in the games. This is where I began my curiosity in to other Final Fantasy titles.
Again displayed with a smattering of miniature figures and the Kingdom Hearts Sephiroth. Another popular one for visitors to my home.
This is my collection. I have lovingly collected these things for a long time. I know that there are a small number of collectors who are spitting furiously because none of them are in their original packaging, but my personal view there is that these things are made to be enjoyed, not kept in dusty old boxes in an attic somewhere or in a disused bedroom waiting to be sold after my death or in a divorce settlement. I never want to part with any of these things and no one could persuade me otherwise. I enjoy keeping them looking bright and admirable for many years to come and I really hope you enjoyed the opportunity to have a look at and hear the stories behind so many of the things that mean a lot to me. And I hope that one day I can do all this again and there will be even more models with even more stories.
Tuesday, 23 August 2011
This is the beauty of modern technology. Being able to blog wherever I am, be it just lying in my bed at home or from my hospital bed when things don't work out just right. Its useful to me in so many ways. It has to be said. I love this thing.
My evening had been a bit crap and my asthma just didn't play ball again. I have started finding it hard to keep focused on anything again. I am hoping that its just that midweek feeling and nothing comes to it. I'll keep my eye on the usual things and if it gets bad, I know how to do something. I am a big girl. I am more than capable of accessing what I need and when. I mean I'll be 24 this November.
Maybe this discovery of using an android phone to blog instead of worrying about getting to my computer means you will hear more from me as I go through my world and get up to whatever it is I do.
After hitting rock bottom last winter, I emailed my local social services team for physical disability, and I opened up explaining how I had been feeling. I also worked out how it was that I managed to avoid the medical for my ESA, it was actually quite simple. They had actually written to my hospital doctors and they had come through for me by telling them exactly how unwell I'd really been. At the time I had expected to be cast aside as had been the case oh so many times before. Upon accessing the service, I was able to get the care and support to help me. Please do not judge me too harshly unless you have lived a day in my shoes.
I guess thats why this blog was originally started, not as a "what is annoying me today" or "how my boyfriend is behaving" and my worry would be that it would be all this would be read for. Not the original purpose, and that purpose was to tell people exactly what it has been like to live with this condition and maybe give those who really have no idea what happens in asthma and the people whose lives have been affected by it.
Today was one of my easier days thanks to some extra pred and some rest between jobs and chores. I managed to vacuum the living room for once and it looks a damn sight better than it did and I am pleased with how things have turned out for me. And my home looks fantastic for my hard work. I will get to work soon about all my collection now it has all been placed in the right way and is all in different parts of the room, adding colour and style.
I will get that done a bit later and I hope it will be enjoyed as it is a rather large and rather impressive collection that I have here and it still grows to this day. With a few pieces left to acquire and of course place when they arrive here. Right now the only things my collection need are:
Advent Children Play Arts Tifa
Advent Children Sculpture Arts Cloud
Static Arts Cloud
Master Arms Cerberus
Other Final Fantasy games Play Arts
Dissidia Play Arts (Kai)
Final Fantasy Crystal Chronicles
Final Fantasy VI
Final Fantasy IX
Final Fantasy X-2
Final Fantasy XI
Final Fantasy XIII-2 - Not released yet
Kingdom Hearts 1
Kingdom Hearts: Birth By Sleep
Kingdom Hearts DS Games
The rest of the Kingdom Hearts Manga
The rest of the Kingdom Hearts Figures
Which when you consider that I have as much as I do, to get the rest of the stuff shouldn't take anywhere near as long as it had been when I had sidelined my collection for a while due to the home situation and not having the space for the rest of it. Its a large amount of collectables and its such a fun hobby (albeit an expensive one) to have.
Tuesday, 16 August 2011
But yeah, I guess these things happen and I need to concentrate on the more important things, like how my relationship is just going from strength to strength. We have been together for almost 3 months and its been fantastic. We're taking it nice and slow and it seems to be working much better than my usual approach in taking things too quickly. I have matured over the last year or so in such a way that I think I have learned to build and maintain much healthier relationships, rather than ones where the people in them are more interested in validating themselves and bringing me down to their level. I am better than the people who have hurt me in the past and anyone who wants to screw me over in the future.
I feel much stronger as a person, but there are times when people tell me that I am strong and then I am left not knowing what to say. It isn't that it annoys me or that I am being bigheaded, I just wonder what is so strong about me, I deal with what I have because in all honesty, what choice is there? I mean, when it comes to asthma, I haven't really known anything different as I had it when I was small. OK so it wasn't what I have now, but that was down to a lot of poor choices and bad decisions on a lot of people's parts and for that reason, I just accept it and carry on. No point in lamenting over what happened and what could have been. Thinking about what is, instead of what if. What if will drive everyone up the wall and constantly rehashing the same things and tired stories and grievances will only leave you feeling alienated, because in all honestly who would want to talk to someone whose head is in the past?
It is called the past for a reason and I for one am getting sick of the past being all people can talk about. I can be the worst for it and I know this and it is why I have decided to address this problem, admit my faults and actually move on and learn. Oscar Wilde said it best "Experience is the name we give to our mistakes" and it is so so true. But what makes a mistake worse is if it is rehashed over and over again. I walked away from a lot of people because they were destroying me. But the thing was, they only did it because I let them and the fact that I don't let anyone do that anymore is a testament as to how far I have come in such a small space of time.
I now stand before myself and hold my head high. I stand before you today and I take my freedom and I refuse to let myself get to that low. I will take the lows better than I had been and I will not run and hide just because its easier than facing whats out there.
Monday, 15 August 2011
Over the last 8 months or so, when I started using the service from the PDSS (Physical Disability Support Service) I was in a bad place. I was going to hospital 2-3 times a week and I never EVER dared to venture out of the house for fear of my asthma kicking off and it ending up with a trip to the horrible stabby place. And I would never have dreamed of actually enjoying myself or having the strength to fight for what I believed in, so I became pretty depressed. After my therapy and finally getting the balance right with my psych meds as well as getting to what my GP called a "sustainable balance" of the right asthma medications. An email to my consultant recently asking about the reduction was met with a "I don't feel that that would be the right way to go" type of answer. I guess I had built my hopes up slightly to reduce my 20+ item prescription down, but alas that isn't that case.
I guess thats the main thing I have been trying to obtain so desperately is a sort of balance in my life that means I can and will be able to keep on going and keep on surviving. I am relieved in a way because everything that I was worried about when it came to food and energy bills are about 1/4 of what they used to be. Which is good because I finally feel able to cope with all my bills and get sorted so that I can live a productive and worry free life, which then leads to my illnesses being a lot easier to control.
Tom's care is diligent and honest. He doesn't care for me because he feels as though he had to, but more because he wanted to. No rewards needed or questions asked. I am blessed because I have him. I know he can't always rush to my hospital bedside and that's OK. I have proven to myself that I can do it alone and as a result was a LOT calmer and a lot more relaxed than previous occasions. Although I was very thankful that Tom did come because had he not, then I would have been kept in for a few days which was to be the original plan. NOT what I want right now with so much positivity and all these good vibes going around. I should have gone in a lot sooner and probably given in to more than I did in the end, but I think I was worried about how I would cope or what what would happen. I feel more at ease now.
However there is a sadness in today's blog. Yoda passed away last night, after a long life with lots of love and affection. He died of old age in his sleep and wasn't suffering which is the main thing. I will miss that insane little guy with his half a tooth and massive ears, and all that fluff! He was one fluffy little hamster and he was lovely. He will be missed, but I have made the decision that I don't want any more hamsters. They don't live too long and its heartbreaking when they die. I will pay a proper tribute soon to Yoda of course as he was a large part of the family.
Sunday, 14 August 2011
I guess there has been a lot of judgements made on so many people recently and so few of them are made by informed people. It is easy to assume that what may have been true a few years ago has to still be true, regardless of the vast changes in circumstances, medications and my general state of health in the whole sense of the word. Heck, I found out things about my health recently that I had no idea about myself until recently, such as the weakness of my 12th thoracic vertebrae which was caused by what recent scans had shown an old crack in the bone from when I was a kid. How that had gone undetected for so long we don't know, but my specialist informed me that it was quite a common thing, and was probably one of the reasons as to why my osteoporosis is particularly worse in my back. I have had problems with this for a long time and along with the slipped disc, it was good to finally ascertain a definite diagnosis rather than walking around waiting to become unable to do anything because of it.
I think thats been the focal point of the last year or so was to get the correct diagnoses of all the problems and maybe even find out what can be done to sort it. Where as for the most part, people have been supportive and have helped me through a lot of things. Given me support and helping with getting me back on my feet. There has been a small number of people (and you know full well who you are and before you even start Steven this has absolutely NOTHING to do with you) who have made judgements on me and not actually bothered to find out what was really going on, and those people I have lost a lot, if not all of my respect for them. It doesn't help that one or two of these people ought to have known better in the first place, but because of their own self righteousness have been reluctant to look at the situation objectively and have said some hurtful and spiteful things as a result. Not that it was ANY of their business to begin with.
These people I have no time for.
It is worrying that some people can be that petty and make those kinds of judgements, especially when they are mere acquaintances and do not know me as well as they think they do. It would be honest to say that I am not the easiest person to actually know and there are only a few people who really do know me, and not the idealised person or the bogeywoman that they would like to see.
So I have been giving myself some time to process and re-evaluate the relationships in my life and work out who is, and more importantly, who isn't worth a second of my time. Sort of cutting the fat as it were so that I can concentrate on pleasing myself and the people who do matter, rather than being the scapegoat or martyr to other people's selfish motives. I am not that person who needs rescuing anymore. I haven't been for a long time. I refuse to be the victim of other people and I am stronger than the people (who again, know who they are (and NO Steven this is NOT about you)) could ever be in their lives and when they finally realise this, it will be way too late and by that time they will have no chance in ever sharing anything in my life and that would be their loss.
This week I have realised that I have a lot of strength and courage. I am independent enough to get the help I need when I need it and I can see the light at the end of the tunnel. I have people who do genuinely give 2 shits about me and do genuinely want to help me as best they can. I am thankful to these people and without them supporting me and me supporting them, we wouldn't be the kind of disjointed family that we are and that is what really matters to me.
To those people, go ahead. Say your worst about me, but I will refuse to bend to your will nor will I be broken by the words you are so quick to throw at someone before thinking or realising that in your paranoid little minds the concocted slights you are jumping up and down over are all in your head. I would suggest thinking before accusing people of things unjustly or making decisions on a mere acquaintance that in all honesty you barely know. I have been mulling over what I wanted to say for a couple of weeks now and I have finally decided that my usual tactful approach is no longer deserved by you.
To the rest of the people who read this, I thank you. I thank you for your kind words, your support and listening to me, even when I am in a gripe about something. To know I am at least helping people not feel alone or even entertaining someone means more than you will ever know.
Saturday, 13 August 2011
But I suppose there are positives I can take from this. The first is of course it had been a long time since my last one, maybe I can go longer next time? I can cope with this on my own now and the prospect of a 999 call on my own is nowhere near as daunting as it seemed to be when someone else made it. In fact it was incredibly easy and I didn't have to answer a million and one questions which was something I will admit I was dreading, but right away the woman on the other end of the line knew straight away that I had breathing trouble and she talked me through the whole thing. There is also the knowledge that I have the courage to make that call and judge for myself when things just are too much to cope with and the last one, I have a boyfriend who will move heaven and earth to be there when he can. Even if that means travelling from his house in Birmingham to the Alex in Redditch.
All in all, I was very well looked after and even the nurses commented how calm and relaxed I was which made triage a lot easier and meant that I could see a doctor a lot quicker, whereas before I was usually so panicked about interrupting someone else's day and what the next few days were going to be like. Because I wasn't hyperventilating through pure terror, it was easier to get accurate readings of basic obs and I was seen within the hour of arrival.
As soon as the doctor came, he knew straight away that I was definitely having an asthma attack and it was more than likely being made worse by another pneumonia episode and decided right away that the best thing to do was give me more oxygen, more nebs (I think I ended up having 3 or 4 in the end so I was vibrating!) 40mg stat dose of Pred (oooh joy) and some IV magnesium which has become a bit of a staple for my acute episodes now. It worked and just as I was returning from having a rather mucky chest X Ray taken as Tom found me, looking a lot better than I had in days so at least this wasn't a completely wasted effort, not that all the drugs I needed pointed to that anyway.
Thanks to Tom, I was allowed to convalesce at home rather than in the hospital which helps enormously especially when I feel so groggy that all I want to do is sleep and have some peace and quiet. Today I had the enormous pleasure of meeting Tom's mother, Jean. I was happy to finally meet her and be able to put a face to a name and it was nice that we got on really well. I had been a bit nervous, but that is a normal thing when I meet new people. I tend to be a bit nervous and worry that I make a terrible first impression. I need not have worried however.
Thursday, 11 August 2011
In Birmingham, which is a 30 minute train ride from here, the cause of the rioting was stated as poverty. Now call me daft, but I honestly thought that "Poverty" in a community meant that the local people have very little and are just surviving on the "breadline" and that they can only afford very simple ways of life. Now I bring this up because these "Impoverished" people are causing riots and spreading the word with their £300 + mobile phone and or their Blackberry, while wearing the latest designer sports gear which in itself some pieces cost up to and over £100 each. Not what you would expect from people who clam to be "barely getting by."
I believe that this current situation has been caused by an upsurge of greed. I abhor those who act on greed as their main reason to attack society or other people. It is an unworthy cause for anyone to pursue. The Buddhist teachings are that wanting and desire will only create suffering. Whether that is the suffering of the people who have been hurt or the suffering of society who inevitably have to pick up the pieces after a group of ignorant and greedy people destroy the local area and local community. I guess it isn't just the material that is being destroyed, it is the lives of those who own the shops, the people in the community who don't join in with such vulgar practices and the families of the rioters who have to deal with watching their loved one being severely punished by the legal system because of what they have done.
It is safe to say that all of this that has happened has really benefited nobody. It hasn't brought back the person who sadly lost his life and it hasn't made the blindest bit of difference to the legal system who they are protesting against or tearing down the wall of poverty that does effect a lot of people in the inner city areas. But I notice that none of them bought in to any of this in the first place.
For myself, the riots have been a cause of distress as I have been worried about my friends, family and of course even the safety of my animals and my home. Luckily though everyone and everything I hold dear and the way of life which is what I have come to know has managed to continue to be preserved and no-one close to me has come to any harm.
Sunday, 7 August 2011
When it comes to boyfriends, I think its a first that I felt that instant connection, you know. Where everything is just...right and there's no behaviours or anything that he does that annoys me or makes me feel unhappy. I guess for the first time in a long time, I have actually felt SAFE enough to let my asthma be itself, not having to hide it on threat of violent outbursts or having it made worse by stress, anxiety or anything else. For the first time in years I have been able to have my good days and my bad days are nowhere near as frightening or unpleasant, not now that I have some real support and care.
On top of that, I have been allocated a personal budget by the local Social Services. This is a grant of £75 a week that will be spent by them on at any care at home, help with cleaning or even just someone to help me make myself a meal on those really horrid days when I can't even muster the strength to get out of bed, let alone stand and cook a pack of instant noodles. It can be that hard and without the right balance of meds, it can be impossible to keep myself going or deal with the level of pain, from my chest itself as well as my slipped disc in my back putting pressure on the tiny curvature and the nerves in my lower body. The nerve pain is probably the most distracting at times because I can lose sensation in parts of my body and on my right leg, can't really feel anything above the knee on either side. The doctor actually showed me this by poking me with a needle as hard as she could in those areas and I didn't flinch or move away.
I knew the results of the tests I had previously before I even had them. My gut instinct has always been instrumental in knowing what a problem is, and then I can be ready to start any treatment, no matter how unpleasant or embarrassing it can be. It does make me feel angry however when I see people pretending or actually feeling jealous of people who are sicker than they are. People who WANT to be disabled make me sick frankly and it is because of them, and people who think that they know it all about something, that make it hard for people who are unsure of how to get help, or just don't have the confidence to get the help or support they need.
Saturday, 6 August 2011
My new phone is a rather nice Sony Ericsson Xperia. And unlike most new mobile phones I have had, I haven't had the usual amount of teething problems I used to have. Even when I changed from one Samsung to another there was an element of uncertainty and having to get used to it. Even getting used to that particular touch screen was awkward at first. It used to have a quirk, I would try touching it a few times, heck there were times I was nearly smacking the thing to get it to work properly.
But it was an early smart phone to give it it's due. Although "Smart" was pushing it really. It wasn't very smart at times, but I was able to use Facebook or Twitter so I guess that was something.
Now comes the next few weeks and maybe even another step towards getting my life and independence back. I feel like I am coming out of a box, after years of being held in there with something tied around my waist to stop me from running away, or trying to fight back, as my circumstances felt as though they were closing around me. I felt lost and I was in some ways afraid, the light outside my box hurt my eyes and burned my skin (it took me a while before I was comfortable outside on my own again) and I was afraid of everyone and everything. I became known as "that nervous girl" or "the girl with the scars" by people outside of the house and that made me feel worse about myself.
Soon I was able to make myself go outside, to that scary place that was full of those scary creatures and I was feeling alone and scared. I became this timid and nervous recluse. I know, the girl who was ALWAYS going out and getting ever so delightfully sloshed and having just an awesome time while I'm at it. I wound up trapped and unable to escape, from the way I felt or the person who was making me feel the worst I ever could about pretty much ANYTHING and guilty about things that were so far out of my control. I was hurting from loss, I was hurting from being lonely and I felt trapped or that the only person I could trust was the one that was hurting me the most. I am not saying any of this to be bitchy or dig up anything. To be honest, there is nothing to gain by pestering the ghosts of my past and with hope soon they will die away in to the background and I will no longer feel haunted or followed by any part of the past. I only say what I am saying as a comparrisson to how far I have come, in myself.
Its nice, its been nearly 3 months since my last hospital admission and I haven't missed it at all. I like that now I can manage my asthma with the use of just my nebs and any extra steroids when I need them. OK so I do need to use my nebuliser once or twice a day, but thats better than what it used to be, I was using my neb every few hours just to be able to cope with my breathing for just a little longer. That was my daily life back then. Now its amazing, I can kind of have my life back, and I am grateful for it every day.
I would say now to anyone else who was in a similar situation to me:
Get out! That person isn't the one you need. You need to escape and you need to be the strong person you are to build yourself back up and get your life back. No escape is impossible, but yes it can be hard, yes it can hurt and be a long way up to where you used to be.
Thursday, 4 August 2011
Another of my weird habits is that I will have to have a specific ritual before falling asleep on my own. I never did like sleeping by myself. I always like having someone or something that I can cuddle as I sleep. Or that weird thing I do when I wake up, or falling asleep mid-sentence.
I don't know why I wrote this, but it kind of occured to me and I thought it made for interesting reading.
My mind skips back to just 12 months ago. I was at the stage where I only went out when I had to. At the time I was at some New Deal course with the Job Centre, that was a piece of crap to say the least, I mean 2 days a week sitting in this stuffy room with no ventilation, barely able to breathe and not allowed to use my neb without asking health and safety if it was OK, and then having to walk to Sainsburys so I was "Off Site". Then I was getting home to a household where I was no more a part of it than the paper on the walls. I hated it at the YMCA and wanted to leave all the time. I mean it really was the right set for the macabre play that was my relationship at that time. But I really stand by it when I say that I needed to have that dip in my life to really enjoy the wonders that have been coming.
Tom and I are very happy together, sharing in each others dreams and hopes. We just work well together and well, we are really happy. Even if we do spend the afternoon just watching TV or gaming, we are just happy to be with each other and thats what a really what a relationship should be about, a couple who enjoy just being WITH each other rather than having to do fantastic and crazy things just to have something to talk about. I love that about being with Tom, we can just sit and cuddle and thats just what we do. He respects me and loves me unconditionally and I love him for every wonderous thing about him and I really love being with him and just doing what we do.
When you find someone like that, you really do have to take the bull by the horns. Take this amazing love, make it real and then cherish it. Love seldom comes around more than once in a lifetime, so when you find that real and pure thing you have to hold it precious to your heart. And the friends you cherish, hold them close and never let them go.