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.
Showing posts with label Benefits. Show all posts
Showing posts with label Benefits. Show all posts

Friday, 21 January 2011

Keeping busy...

Our pups are such hard work, for us and for Patch, who has taken to them so well. Hope is a little monkey and has started Popcorning around the cage happily. When you see an animal this happy it really does warm the cockles of your heart, especially after a month like this. It's been so difficult just lately with finances being out of control, illnesses and the loss of a pet. It all seemed to hit us all at once and in our grief-stricken states we buried our heads in the sand, waiting for it all to go away, but life NEVER works that way.

So this morning I was all about RESOLUTIONS to our problems, be them with debts, personal and grief, rather than avoidance, which seems to be Steve's way of dealing with anything. Unfortunately no matter how much you ignore a problem or pretend its not there won't make it go away. To the contrary, it often makes it worse, which I keep trying to tell him this, but he doesn't listen and I would often wind up taking everything on myself and getting snowed under. Not anymore.

I spent hours today and yesterday negotiating with the people we owed money to, including our housing officer and the several companies whom I owed money from Credit Cards I had taken out in more secure times. Credit Cards, now there is a potential minefield, but we won't get in to that as it is neither constructive nor something I really wish to discuss, but I spent my time calling this number and that, setting up payment plans and working out solutions to our debts rather than ways in order to make them worse, I.E Loans or IVAs. By the end of this month, we will be not only up to date with everything, but back in a situation where we will be able to cope a lot easier with the financial constraints. It's been a good morning's work.

The pups are sleeping at the moment, after some carrot and lots of affection, Gizmo decided he wanted to use me as a comfy place to have a nap, while Hope was pestering Patch for a while. They were squeaking earlier too, which is a sound that really warms the cockles of my heart. It is a really happy place that we are in at the moment, even if there is a bittersweet feel whenever we think of the precious little life we lost. Our hearts are all healing and we're feeling better. There has been a number of poems that has helped us through the grieving for Alphonse. One of which really helped me as it reminded me that although the body had died, the soul lives on, and is in everything around us.

Do not stand at my grave and weep
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.

Mary E. Frye (1932)
Loves
Wendy xx

Wednesday, 8 December 2010

LOOOOWWWWWW...

This was out of the blue, but I have always been advised to keep an eye on how my body behaves, things like Peak Flow, Temperature and now Blood Pressure. This came from the nurse measuring it when I went for my blood tests to find it was really low. It has ALWAYS been low, but she seemed a little worried so I decided to humor her. So I brought a Wrist Blood Pressure Monitor. A strange gadget really that takes an accurate reading of blood pressure at home.

I got home and had a rest for a while, after sorting out a million and one things in one day, well not literally, but when you've been up since about 8 and have only really gotten to settle down and chill out round about now. It has been MAD!

First things first it was payday... This is a sure-fire way to stress, tears and a downswing that lasts for days and a guilt cycle if I spend my share that little bit wiser. So I was already on edge on this one so I just did what I usually do, focus on the first task ahead and get moving.

The first task was an appointment with Dr Pike. It started with some excellent news that other than a slight raise to my cholesterol (and I mean it was abnormal by 0.1 mmol/L) but as my weight loss has been excellent just lately we don't think this will be an issue and when we repeat all my tests in 3 months time (monitoring how my body is working) it will be reduced and a LOT better. The main thing we were worried about was my blood glucose levels. People being treated with anti-psychotics and steroids (amongst other things) can develop diabetes as a result. We wanted to check this out and make sure that this wouldn't be an issue, and it was GREAT news, my blood glucose levels were perfect!! I was so happy about this.

We then went over my recent A & E trip and make sure that all of the muck was clearing off my chest and I am on the road to recovery. More good news is that this is all clearing up and I am starting to feel a lot better. A good listen and it sounds like its all going well other than a mild flu bug that has been going round congesting my nose and making me feel a bit deflated and tired. I am dancing as this is all FANTASTIC news and after the last week, this was just what I needed a clean bill of health for once. We renewed my sick note, although my infection is going away and all is good there, my asthma is STILL on a mission to wind me up, Dr Pike advised me to keep up with my nebs and inhalers, and I really was looking better than I had in a while. Since having my neb at home, things have been so much better. I can get on top of things before they get so bad that I need to go in to hospital, which is as reassuring as it is a boost to my morale.

Yet again, I digress, I then went to collect my prescription, we had to be back at the Doctor's for about 11:40 anyway as Steve had an appointment to see Dr Pike, but we had about 2 hours to kill. We decided that we would go and get our household things, take those home with us and then head on home for a bit. We did this and chilled out for a good while, a nice drink, before heading off to take in my sick note to the Job Centre, post off a few other forms and what have you.

Then for once it was my turn to be in the chaperone's chair. It felt a little surreal, I will admit that and I helped Steve explain what was wrong, after a good chat with the student doctor Sara, and another chat with Dr Pike, it was decided that Steve had a depressive illness. I had expected that to be quite honest. He's been started on some tablets and by the looks of things, I think he'll be OK. So that went well.

The last big job today was food shopping. How mad are supermarkets this time of year!! We also got our decorations for Christmas up and the flat looks WOW! This time last year, everything was so depressing and the only things we had were the cast offs Steve's dad didn't want. Our money was really messed up and we had nothing. Between us, we were so miserable and I was always getting sick. I can honestly say that was a low point where I made the promise that this year would be 100% better than last year. I NEVER wanted to have that sort of low ever again and the admission to hospital on boxing day really was the icing on the shit-cake, but that is another story.

So after a mad day, I managed to take a resting blood pressure reading... 96 / 58 with a pulse of 100, I had to laugh, after a mad stressful day I really expected it to be something ridiculously high!

Love ya muchly!
Wendy x

Wednesday, 3 November 2010

To THRASH a noisy neighbour...

I know at my age, I should know better, but when you get woken up from your mid-morning nap (after an early appointment to see whether its JSA or ESA that I should be claiming, (turns out that for now, ESA, the DWP's idea of an incapacity benefit without the confusion, yeah OK) ESA (Employment Support Allowance) for now as I am too sick to work. No matter how many times I'm told that, it is still a kick in the pants really as I always went with the idea of "It's not death if you don't accept it." from James O'Barr's graphic novel, The Crow. Unfortunately, no matter how much I try and hide it with bravado and me just being me, it doesn't hide the fact I am sick and I am classed as "Disabled". I hate labels.

So you can imagine the mood I was in when I got home, just wanting a nap, a drink and maybe something to eat when I woke up again. So having to deal with my neighbor and his 'Drum and Base' rubbish was the last thing I wanted. I'm not, by nature, an irritable person, nor do I begrudge anyone of what they like or enjoy, but I do get irritated when people play music so loudly that it rattles everything in my own room and I can't hear myself think. So I took the logical answer, well the typical of me answer and dug out various CD's of Thrash Metal, Heavy Metal, Industrial, Steam Punk and everything else that just seemed to take my fancy at the time and let it rip. As loud as my speakers went. I know its not the moral high ground, but he got the point in the end, even in his usual cannabis induced stupor.

Now, I have nothing against anyone, but it does annoy me when able-bodied people sit around all day, either drinking or smoking themselves in to a blind stupor. It's like a slap in the face to someone like myself who lives healthy, doesn't drink or smoke and suffers endlessly due to my long term, life limiting condition. It just seems a bit unjust at times I think, but it really gets my goat. Especially when you hear that drug addicts or alcoholics who got themselves in to that state get DLA and all sorts of government hand-outs, where as there are people such as myself and many others out there who have to fight for any kind of help from the state. Its twisted. If you can work, you should.

I realise that this has been a rant about "Benefit Britain", but I really do find it an insult that the system works in such a way that some lazy pleb can get all the handouts they want, have kids that the tax-payer pays for and doesn't get a job because getting drunk or high is more profitable, and someone with a crippling condition, or like someone I know, a serious brain tumor has to fight just to survive. I think that is exactly why I don't take any rubbish from any of these morons as I find them just too pathetic to feel sorry for.

On a positive note, I would like to say a Happy Birthday to one of my dearest friends, Stacey. As well as a hearty congratulations to Mike, Daimon and the rest of Labas! for their recent success at a gig locally and of course wish good luck to my friend Georgina in her interview for her internship.

Love ya

Wendy x 

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