For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Thursday, 23 April 2015

On Social Care

Woke up relatively early today. Well, it was early for me anyway. I have no idea, I just woke up feeling strange and then wound up getting up, doing some things and then curling back up after my carer had been. I can't even explain it but having the carers in has made my life better in ways I didn't even know of. I wake up and feel like my day isn't going to be full of struggle and pain and I can enjoy my days. Admittedly I don't do loads but honestly, there isn't really loads to do. In many ways though, I am thankful that I have the support and carers who work with me. I rely on my carers to make sure I have eaten, drunk and have had the appropriate meds (they prompt me to self medicate) along with providing my welfare, personal care (things like washing and dressing) as well as help to access the medical care needed. I have built good rapports with carers and there are a group of them that I really get along with. People don't realise how much a carer does for a person and how vital the work they do is.

Although it wasn't until recently that it dawned on me, there are so many younger people who aren't as lucky to have people fighting their corner. It is very hard for younger people with disabilities to get help with things like their personal care and are left to try and cope alone. It is difficult, but the truth of it is that "Adult Social Care" is predominantly accessed by the elderly and because they are living longer and wanting to retain their independence (and fair play to them), there just aren't resources for younger people. I remember talking to a social worker who assessed me recently and she even said "If you were 50 years older, we would be able to provide for you without problems. The trouble is that you are very young." Personally I don't think that being young should mean that you can cope.

I once said to someone, live a day in my shoes. See how I have to try and get around despite the fact that my lungs are failing and how I can't breathe properly (when I move, my SPo2 drops a lot and it often takes me a while to recover). I can't carry a cup of tea around (due to shakes because of my meds), often I drop it and burn myself. On my own, without the carers, I wouldn't cope.

But there are older people who aren't even provided for either. These poor people aren't helped by social services because they don't know what help is available or that the care homes are fit to bursting without more being supplied, some of them aren't helped and their families don't care for them either. The people who need care and because it would cost the families, they don't bother. Some families promise to take in an elderly relative and then don't bother because they find them difficult, a lot of older people with dementia can become frustrated easily and as a result they lash out (though there are some out there who use it as an excuse when an older person has lashed out, despite them knowing that what they were doing, the problem is that it should be established whether they know what they're doing is wrong) and care workers and hospital staff bear the brunt.
 I was reading about the abuse of staff in elderly care homes (because no one seems to see that it isn't just the residents who get abused because that is most commonly portrayed) and some of these people have been seriously injured.

On the other hand, I find how some people treat the elderly to be dire, when they become too much hassle and need too much help (to some people, any help is too much) they pack them up when they get sick and dump them in a hospital where they have to be admitted as they have nowhere else to go. This often means that they have to stay in hospital (among all the bugs and other things that aren't good for them) even when they are classed as "medically fit for discharge". These "bed blockers" are a huge strain on an already struggling NHS and it makes it harder for wards to care for patients, especially if patients are quite demanding anyway (often due to their condition, sadly dementia is a terrible thing and they often need to have someone sit with them or they wander and cause mischief) and there just isn't the staff to sit with them and it's sad. They have their dignity taken away and there is no way of stopping it.

I wonder, do people assume that someone who is young doesn't get sick? Unfortunately it has become an assumption that people who are younger will always be healthy. Do we just throw people away when they become too much? Why are medical wards (most commonly the respiratory wards) used as "dumping grounds" for people who no one seems that bothered about? I love my nan and I wouldn't ever think of just dumping her in a hospital because she needed some help. At the end of the day, they are still people. But there needs to be more provision for younger people in Social Care. Personally, I believe that Adult Social Care should be split up a bit (but won't due to funding cuts and Local Authorities' hands being tied) and 21-70 year olds should be dealt with differently to 70+ (70+ should have more specialism towards dementia and elderly care where as 21-70 year olds would be more focused around allowing the service users to do more of what they want to and what they feel is "normal"), but as I say, due to constraints, this isn't possible and it is a shame.

Maybe its something that once the new government is in, they will address?

Wendy xx

Sunday, 19 April 2015

This Isn't Defeat, It's Determination

Since my last admission, I think I was feeling a bit depressed and upset about things. After all, who wouldn't feel down and hopeless after all that? Maybe I'm working though some kind of psychology of what it means to have lung failure, either way, I am coming to terms with it all and I am still trying to do what I can. I think I just needed something to remind me of that.

As lame as it sounds, it was an anime that finally broke through my feelings. Maybe its because one of the protagonist characters is disabled, yet he still goes on, doing what he has to, achieving goals and working out what the truth really means. I relate to Edward Elric quite a lot, he lost his right arm and left leg, his brother lost his whole body and became a soul bonded to a suit of armour. Despite that, Edward went onto get automail (metal prosthetic limbs which work exactly like flesh would) fitted and joined up as a state alchemist (a military service of alchemy experts who use it as an ability, each with his/her own specialty) to pursue the means of returning his brother's body and setting the wrong things right. Fullmetal Alchemist (and the other series, Brotherhood) is one of my favourites.
In the the Brotherhood version, there's a scene that got me. Edward is slumped in a chair, too miserable to look up and his eyes seem dull and lifeless. He's visited by a couple of people who tell him what he could do. One of them comments how defeated and sad Edward's eyes look. The other says "Those aren't eyes full of defeat, there's fire in his eyes." And it kind of woke me up. It made me think. Maybe mine aren't eyes of someone whose ready to throw in the towel yet, but the eyes of someone who wants to fight, who wants to get their body back to what it was. Its a long journey but I'm not going to let that stop me. I'd have to inject antibiotics on a regular basis to achieve the best health possible for me, then I am willing to do it.

I've finished this course of Tazocin and it has been helping. I'm getting less infection-y and more just me. It's probably going to be a baseline now but I'm OK with that now. It was kind of hard to take in at the time. It isn't every day that you get that kind of news and its a natural thing to be angry, hurting and generally wanting to throw it in and just bury your head. The worst thing about it was the knowing that had they performed the tests last August, or maybe sooner, they could have helped me and I may have never got this far or this bad. That's the thing that keeps going through my head. I feel cheated, let down and I just want the "doctor" who could have helped take a step back, imagine how he would feel if it were his own daughter going through what I am now. Would they have been dismissive? 

I doubt that.

The worst thing about IVs is my veins. They are useless. Next course, I'll have a midline or PICC put in. This should last better than a normal IV cannula, these tend to block or "tissue" within about 2-3 days. Then you either push fluid in to the skin or muscle which is painful. Unfortunately, we have probably tapped most of the veins in my forearms. Absolutely covered with bruises and holes. Just more scars to add to the collection. They don't tap the legs or feet in the community, the way I tend to sit it wouldn't be best either! But still 10 cannulas in 14 days, that's painful.

Natt is moving soon, he's got a place and is going through the decoration and set up, he'll move I'm permanently when its all set up. He isn't going far and will probably be here often and making sure I'm OK. I'm not going to say too much as its not my place to publish anyone's personal information online. I bear in mind once someone's information is out there, it could cause all kind of problems for someone. Its not fair or my place to do that. When Natt does move on, we'll be sorting my living room back. Turning it back to a living area from an ad-hoc bedroom. Making it a place to spend time doing fun stuff, interacting and enjoying it. The animals will move back out (although I won't keep rabbits outside again, unless I padlock the cages shut so that little hands can't repeat what happened) and my  bedroom will be just that. A place to sleep and watch the odd DVD. 

I want to replace a fair bit of furniture. Make it all match and look nice and make sure I can use my home without causing issues with my breathing, main issue I seem to have is with dust. The other day, I needed a break from the world of chronic illness. I feel like sometimes I am behind the bars of a cage created by illness.Unfortunately this is kind of a typical way to feel when you have chronic health problems. I mean it's not impossible to go out but at the same time, it's not exactly easy. Going out takes planning. Where, when, how long? That kind of thing. I have to carry certain supplies with me and although some of them are vital, others are controlled drugs and need to be carried carefully, along with a prescription to prove that I have been prescribed them (I know it does seem odd but there are some people out there who would do anything to get a fix of some of my meds). I just want to make it my own. I've been here for 4 years this month (I know, right?) and as odd as it seems, I have had to always decorate to the style of another and myself. It'll be good to decorate the place and mark it as my own. 

It's been 4 very good years here though, despite the occasional arsehole upstairs. The flat is a comfy size and when we redecorate it'll look great, just the place for me really. The stop-gaps (which I really should have replaced sooner but you know me, I forget after a while) of flooring will be replaced. I have a new proper nebuliser in the bedroom (replaced my old one that had walked itself off the table a few times and just wouldn't nebulise anymore) and well now I am making the best of things.

Wendy xx


ABG (2) acceptance (5) Adventures (1) Alphonse (2) Ambulances (5) Amusement (1) Angry (3) Animals (2) Another Day In Midgar (2) Appointment (1) Art (4) Asthma (22) Asthma Attack (12) Asthma UK (2) Awareness (2) Bad Attitudes (1) Bass (1) Benefits (3) Birthdays (3) Blogs (2) Blood Pressure (1) Books (1) Bucket List (1) Busy Day (2) Calming (1) Catherine (2) Childhood (2) Chocobo (1) Christmas (4) Cleaning (2) Close Calls (1) cold (1) Comforter (1) Compensation (2) Creativity (1) Cruelty (1) Custody (1) Cute (1) death (3) Debt (2) Depression (4) Design (1) diary (1) Disability (1) Disgust (1) Disney (1) Distraction (2) Doctors (4) documentary (1) Dr Pike (1) Dreams (1) Drugs (1) DWP (1) Dye (1) Eating Patterns (1) ESA (1) Exhaustion (3) fair share (1) family (1) Films (1) Final Fantasy 7 (5) Flu (2) Fluid (1) Food (1) Friends (7) Gaming (2) Gizmo (2) glass half full (3) goodbye (1) GP (5) guidelines (1) Guiniea Pigs (6) Guitar (1) Hair (1) happiness (6) haters (1) Help (1) HND (2) home (3) home use (1) Honesty (3) Hope (4) Hospitals (8) Housework (1) Human Nature (1) Illness (5) Infection (5) inspiration (1) Instincts (1) Joke (1) JP (2) Judy (1) Labas (1) Life (2) lost cause (1) love (1) Luke (1) Lungs (3) Lush (1) Me (2) Medication (7) Memories (1) Mike (1) Mind (1) MSN (1) Music (6) My Past (1) Nathaniel (1) Nebuliser (8) Needles (1) neglect (2) Neighbor (2) new look (2) New year (1) NHS (2) Noise (5) Omen Shadow (2) One day's supply (1) Organ Donation (1) Pain (3) Patch (1) PDSA (1) Poem (1) Positivity (1) Pred (3) quotes (1) Rachael Wakefield (1) Rachy (1) Random ideas (1) Rant (1) Recovery (7) reinvention (2) Reporting (1) Routines (1) sad (1) salmonella (1) scared (1) Sean (1) Selfishness (1) Sephiroth (4) Sephy (3) Simon's Cat (1) Sims 2 (1) Sleep (6) Sorting it Out (1) Spite (1) Steve (1) Store Room (1) success (1) Support (2) Survival (4) Tattoos (1) tears (1) Technology (1) Temparature (1) Thank You (4) The Crow (1) Therapy (1) Thoughts (1) Thrash (1) Tired (1) Toys (1) Transformers (1) Transplant (1) Veins (1) Vomiting (1) warnings (1) West Midlands Ambulance Service (2) winter (1) work (1) Year (1)