Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

Friday, 17 May 2013

Cruel B*tch

Cancer is a cruel bitch. Tomorrow I have to attend a funeral of a man who failed to live to see his 45th birthday, which is heart breaking in and of itself.

What's really sad is that this isn't a shock anymore. This is not the first funeral I've attended of a cancer victim and I know it won't be the last. What makes this more poignant is that the first person I lost to *C* had the same type down to the minute details that this person struggled with so I don't have to imagine what he and his family and friends went through over these past months. I already know.

Tuesday, 16 April 2013

Not An Excuse

Ignorance is Not An Excuse. So I do not except George Osbourne's excuse for his 4x4 being parked clearly on a disabled bay just because he wanted/needed a BigMac.

I'm sick of the excuses and outright reasons high profile - and regular - people give for parking in disabled bays. I have been unable to use stores/shops because I couldn't park as I am entitled with my Blue Badge because non-blue badge drivers think they have the right to use the bays closest to their destination.

I don't know what's worse, those that take these spaces regardless or those who believe having a new flashy expensive car means they can use the larger disabled spaces for their new motor to avoid scratches from trolleys. I kid you not. A couple of years ago I was at Tesco and thought myself lucky that I got the last disabled bay and didn't have to detour to another supermarket to get my much needed groceries. Walking slowly, actually more like stumbling with my carer holding me upright, I struggled into the store. Passing the other cars no less than six had absolutely no blue badge displayed, and the only thing they had in common?, they were all brand new luxury cars just released that month.

Monday, 15 April 2013

Massager

My latest 'aid' that I bought with the help of my DLA arrived today. It's a seat topper massager, I had one years ago which went AWOL when we moved to this house a few years back. My Mother and I both have Homedic Shiatsu Pillows but these are quite a bit more limited, but no less helpful in their own way, that the seat topper.

It cost me around the £25 price ticket including postage, I'll be putting video or pics up to show it properly. Probably better than I can explain in written words.

I love that I can massage (with or without heat) my entire spinal column, my shoulders and all the way over my hips, all at the same time. Also the massager has three separate areas, bottom, middle and top of the seat and you can use them altogether or in one or more area at a time.

DLA is a benefit which is there to help cover the added costs that living with a disability/long term illness can incur. My seat topper is just the latest 'big' purchase I've made courtesy of my DLA. There is regular smaller items like special shoes/clothing requirements (as well as those which require regular replacement due to quick wear/tear), specialist food/drink, specialist facials cleansers (I can't use regular soap) as well as special hair shampoo/conditioner due to the side effects of medication and some of my medical conditions themselves cause.

Monday, 8 April 2013

Update

Well it's just a quick update from me today again. Tomorrow my Uncle - who passed away last week - is due to be cremated at 12.30pm. So I have to go across town at around noon and try to get a decent parking space as close to the crematory that I can so I don't have to mobilise too far given how much pain I am living in at the moment. It's more than usual and that's saying something.

Some of my problems is due to the over doing that I have been doing but as I had no other alternative or option I had to 'over-do' more than usual over the past two weeks. Unfortunately I haven't been able to rest more to recover during this past week while my brother is on holiday with his family and I have a break from child minding duties.

Shame but RL does not give you breaks just because you desperately need them.

Thursday, 6 December 2012

Apologies

Excuse my lack of updates here, but my PC died and had to go away to be possibly fixed. It was away for around a month when it was finally returned by the courier service fixed with a new PSU installed inside the tower itself.

Since it returned a couple of weeks back or so it's been tricky. Half the time it crashes when I attempt to shut down which concerns me. So I'm babying it as I think it's not quite right. While the new part got the darn thing to switch on, which it wasn't doing hence the need to send it away to the repair-shop  but I think it's dying slowly. So I've spent the past week or so transferring content off my PC to external drives so if it does die again I won't suffer too much of a loss to personal data.

Saturday, 29 September 2012

iPod Dictates


Hello there, long time no read, I am currently testing out the free iPod app for Dragon NaturallySpeaking version 12 which works as a wireless microphone for the software.

I'm currently using both the app with the software to dictate this blog post. I'm quite impressed with it so far, but find that unless the room is completely quiet I need to hold the iPod quite close to my mouth to have it to translate accurately. Fortunately with my television muted I can place my iPod down on the table in front of me and talk normally.

Wednesday, 1 August 2012

Respite

I attended my OT appt absolutely wrecked. No change in my hand strength test but I did have a major flare up when I had to press the darn machine to get the figures which led to me spending 15 minutes in warm water while at the hospital.

She advised me to go to my GP about my feet, she says Fibro doesn't cause that or swollen fingers which I am also suffering from a lot. Already knew that, I figure the fingers are RA related because I've had arthritis in them since initial diagnosis, as for the feet she reckons it could be arthritis or some unknown condition I've developed which can be either connected to my disabilities/diseases or not.

I found that PC World have changed the in-stock estimate for the Google Nexus 7 tablet instead of being the 2nd of August instead of the 10th which it originally was when I pre-ordered at the weekend. Probably explains why they charged my card yesterday and got payment from my bank. I wondered as it wasn't due back in stock for another 10 days.

Tuesday, 31 July 2012

Stressed Out

I'm feeling stressed out and totally fed up. Disgusted. Terrified. Angry. Furious Even. All those lovely negative things that are regular visitors to my life.

Thursday, 5 July 2012

Here I Go Again

Well, another WCA dropped through my letter box mid afternoon, so again I have to fill it in and wait to see if I'm found miraculously 'fit for work' with or without the infamous ATOS medical.

Thursday, 31 May 2012

End of May ... Already?!!

Well, it's the end of the May already and this year is speeding in quicker than 2011 which in and of itself was a quick year. Is this what happens? Every year after a certain age the time speeds up for you?!! Frightening thought that there!

So on the 10th I had my check up with my Rhematologist at the hospital and don't have to go back until January 2013 for my next one.

Wednesday, 2 May 2012

41

Well today I turned 41 years old. Yeah Me!!

Yesterday was blogging against disablism day, something which I have never heard of previously but wish I had as I would have made a point to blog yesterday.

I am getting ready for Fibromyalgia Awareness Day which is the 12th of May and haven't had much energy to spend much time on any of the regular 'disabled' haunts where I talk with other disabled people and those who care for and love them on almost a daily basis. Trying to give what little help I can.

Tuesday, 17 April 2012

Long Time, No Blog

I know, I know, I know, I'm a very bad blogger!

Life has been a tad difficult with my health over the last month, more flares and mini-flares, than I can remember. The abrupt change in weather from sweltering heat to rain to snow kind of scuppered me. Stared with loosing my voice and just shot off in a lot of different directions from there on out.

Tuesday, 13 March 2012

What Cha Doing?

To quote my youngest nephew, "What Cha Doing?", and I'm learning how to to do things like video blogging and pod-casting.

As I am still in the early learning process of creating my own videos I have also been looking into embedding audio files - pod-casts I believe they are referred to - for when I am unable to sit and use my computer/laptop to physically type up content for my blogs.

I bought this really cheap Computer Gear microphone and am blown away by the audio quality it provides, I tested it out using the free Audacity software to create audio files. It really surprised me even sounding better - to me anyway - than my live chat headset I got for learning voice recognition on my laptop. Or rather my Mother's laptop, I must remember that, but she wants to get the full use of her laptop so it's not sitting in it's bag between the times she wants to use it. So it sits by default in my room and it's a big help when I am unable to sleep or unable to sit comfortably enough to sit in the living room with my desktop.

I can rest my weary bones on my much more comfortable memory foam mattress in my room when required and still not go round the bend with nothing to do. I find using my pc to be a great help especially on days and weeks where the walls are coming in on me and I'm not physically able to get out. Thank you very much for technology!

As well as giving me access to the world outside my four walls, it helps me by reminding me to take my medications, when to pay my bills so I don't forget and have to also pay charges, and stops me becoming even more solitary than my disability already does.

I can talk, virtually speaking, to others like myself who are house bound or trapped due to illness. People who understand completely, allowing me to be less alone in this whole she-bang.

I lived through my spinal deformities and all the health woes and pains it caused me and all I had access to was books while trapped in my bed for days on end only seeing anyone else when they returned from school/work that day and I couldn't expect them to 'entertain' me the rest of time. It wasn't fair to them. So I spent hours, and hours, and hours alone with only my pain and thoughts for company. So believe me technology is a big help and at least a companion for me when I am physically alone.

Sometimes technology is the truly the  best medicine.



Saturday, 3 March 2012

Let's Talk About It

We are inundated with unsolicited advice when we go out in public, so much so we dread travelling outside our house.

Will parking in the supermarket and displaying my blue badge mean some random stranger to launch a scrounger hate filled rhetoric in my direction? Or will this be the time that it stops being verbal and turns to something physical? Is it worth the risk to find out?

These are thoughts that I wrestle with more and more these days, every retelling from another disabled individual fuels my fear for my own safety while doing something that millions do everyday. Shop for food.

Disabled hate crime is disgusting, even more disgusting is that it's those charged with supporting and helping us have any kind of life who is fuelling this fire of hatred.

Discrimination of all types is morally and legally wrong.

Why is disabled hate crimes not considered just as vile as someone verbally and physically attacking another person because of their skin colour, religion or sexual orientation?

Friday, 2 March 2012

How Do I?

How do I explain to you how I feel? How it feels to be in pain 24/7, seven days a week, 52 weeks a year?

Just how to you go about explaining it?

I've sat down more times than I care to remember to put my thoughts on this into words adequate enough to explain how it feels to be me.

Sometimes I lie awake silently begging invisible Gods and Goddesses to help me, to stop the pain just for a few minutes, a couple of hours or even for a whole day. What would I do with a full day without the pain that has become my constant companion. My invisible life-partner.

Invisible to everyone but me who feels it's presence even on any good or fairly good days I might have.

Along with the illnesses, diseases, disorders or however who would class them I also have other invisible life partner. One is called depression, another stress, another nerves, another frustration ... the list of these life partners are endless. Or at least feel this way to me. Every-time I name one another appears to take it's place.

How do I explain to those who are supposed to help me, therapists, doctors, specialist, friends, family and politicians alike. How do I explain to those who don't want to understand?

My body is a battle ground and every second of every day it is being fought over relentlessly by all these invisible enemies. My body is a field of war, but how do I explain this? How do I explain how I feel?

How to I explain the fear that live with?

Will this be the appointment when I am given yet another disease or disorder to add to my list of afflictions. Is this the day  I am given the one which will take what little life I have from me?

How do I explain?

Can you tell me?

Sunday, 26 February 2012

Vlogging

I just got myself a little budget pocket camcorder, a Kodak PlaySport ZX5, Amazon had it on sale with around 40% off RRP. So I bought it as I have been enjoying recording my diary either on my iPod or on my Mother's laptop via the in-built webcam.

The webcam quality and file size left a lot to be desired and while it was good for just personal journalling if I wanted to share anything on-line on my blogs it was quite frankly awful.

My iPod is only the entry level 8GB sized version and I had to remove clips daily as space was at a premium. So I tend to record short clips of my family, my nephews mostly, and record audio diary entries through the built in Voice Memos Application it wasn't much use for recording vlog entries for any of my blogs. I was seriously thinking of vlogging my book reviews as typing has become a major pain. Quite literally.

Also while the iPod gives great video and audio quality you have to physically hold it at arms length at all time so that it's not 'in your face' so to speak. As I have shoulder pain due to having RA in both shoulder this was impossible for me to physically do and the iPod isn't the easiest thing to prop up to record from. Evne though the front facing camera was great for making sure you were shooting a good picture. Not cutting your own head half off or something.

So next I thought of my old 3 year old digital camera. This records AVI videos and while the quality looks pretty good on the small viewer screen you don't know how the video is until you transfer it to your computer and then the video looks washed out and the video rather tinny sometimes. All right for personal diary/journalling but not the greatest for posting. But then I am going to record on both my Kodak and my Olympus at the same time and do a contrast test for myself for my own curiosity.

So look forward to some Invisible Me video blogs in the near future. Hopefully!!


Monday, 13 February 2012

Painful Me

My jaw/gum pain is battling against my joints and other painful areas to see who is the victor at the moment. The weekend just a cloud of pain-filled memories. Yuck!

After getting my tooth extracted on Friday I stood on my trembling legs in the dentist's reception area thanking all deities that I had my crutches to stop me landing in an undignified heap on the floor in front of the others there.

Thursday, 9 February 2012

Depressed

Quite honestly I feel like lying down and crying myself to sleep. Hoping when I wake up that my life will be better. Or my legs/hips/back will be all healed up and usable once again.

I have just had the Occupational Therapist visit from the social work department/council I am getting the hand-grip attached to my bed to allow me to get in/out and pull myself up with rather than reaching over my head to struggle using the bed-frame which I've been resorted to.


Monday, 6 February 2012

Busy Week

This week is totally non-stop and as a result I won't be able to write the first 'real' post for this blog.

Originally I had two appointments, my usual Physiotherapy on Wednesday and the dentist's on Friday to get a tooth extracted. Easy on my non-existent energy level and pain level.

Today I had an incredibly early wake up call to go to my brother's before he left for work at 8am, this was the second day (last Thursday being the other) that I've waited in for his modem from BT to be delivered. He checked with BT again this lunchtime and found that the person in the call centre who on Friday said his replacement modem for the one which went awry last week in transit would arrive today was wrong. Two working days was needed for dispatch and it wouldn't be delivery till tomorrow.

So home again just after lunchtime and I'll be up early again tomorrow to go to his house and wait in for the delivery which hopefully will come this time. Third time lucky and all that!

Anyway if it doesn't arrive he is out of luck as I have appointments Wednesday through Friday now that I can't change to stay in his house to await delivery if it doesn't turn up tomorrow.

This afternoon the Occupational Therapist at the Council/Social Work department phoned about the referral she got from my OT at the hospital last week. She is coming Thursday at 11am to see me at home to assess these problems I'm having including not being able to use the overhead shower that she actually arranged to have installed for me about 8 years ago when we moved in here originally.

Also as the schools my three nephews attend go off for 3 days in-service training starting Thursday so we have them all for the entire day on Thursday. My Father is intending to take all three with him to pay our rent when the OT is due so that they won't get 'in the way' so to speak while she's here assessing me.

Friday I have an appointment in the morning to return to the dentist, I was there last Wednesday for a check-up and back on Friday past for a filling and the results of the x-ray I had taken, when I am due to have a tooth extracted.

Friday, 3 February 2012

First Post

Original title I know!

I've been thinking long and hard about what to put into this post to be totally honest.

A few months back I created my disability/health blog fmshell here on blogger but now find that my usage hasn't been exactly what I intended to be. I decided to create this blog to serve the purpose that my original blog was intended for.

Fmshell is a rather vent-like, ranting-like, blog rather than devoted to my own feelings/opinions on living with my disabilities and the impact of the Welfare Reform Bill on me personally.

So here is my disability blog where I share my own perspective on living day to day with the impact of several disabling conditions and how the 'big society' that the government rhetoric claim they are creating affects my life.

I'll be back in the near future with better thought out and hopefully thought provoking posts.