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Sunday, 31 January 2016

IS THIS THE LONGEST AND WORST JANUARY EVER?

Being an amputee one of the biggest issues I have apart from not having access to places is the weather. I wasn't steady on my feet before but now that I have what effectively feel like stilts, its a whole lot worse.

The main issues are rain ( living in the UK is 80% of the time), ice/frost and snow. Apart from the issues of the cold causing problems with the joints due to other health issues I have, this weather turns me in to a virtual recluse or risking a serious fall. Because I do not have a flexible foot or ankle and the prosthetic comes up to my knee cap, it makes balance and bending in them very difficult.
The weather since Christmas has been all over the place. High winds that caused issues with balance and asthma for me, torrential rain which meant a huge chance of slipping every time I went in doors, snow which means no outside at all, and now the media is telling us that it is all to start again with server snow due to it the UK.

As if already having a list as long as your arm with health issues isn't enough it looks like more will be added to it this year as mentioned in the last blog. I am struggling with university already and as well as missing  a second deadline now,  we have only been back a week and have already missed two days being in for lectures, with more to come due to all the appointment's I have coming my way. Dad is having money going out of his account with nothing to account for it as due to the dementia he is forgetting to pay his bills. this is going to mean more appointment's with social services ( for what good it will do).

So as well as struggling with my own demons (my depression, which is not uncommon for people with serious health issues or amputations to battle with), my health issues and university but I have my dads ill health to deal with and lack of control of pain. I can't speak for other people who are disabled but the hardest thing I  am finding at the moment is trying to do what every one else takes for granted, sometimes just keeping my head above water is a struggle. Being disabled to me means having to work harder to be "normal" like every one else. Things I used to take for granted and most of you still more then likely do, can be the biggest struggle for me.

Just getting up in the morning is a battle. Moving to sit up and get out of bed can be so painful it makes you cry. Getting ready can be a struggle so you need someone to help getting things on or off. Don't even talk to me about the shower ! The act of showering and the pressure of the water on my skin can sometimes be so painful that just having the show can set off a major fibro flare. Not to mention dropping stuff on the floor or things out of reach you just cant reach as you have no balance to do so ( weebles wobble but they dont fall down....unless you have no legs on and reach for something and go  face first into the floor ).  Then we should talk about the holding cups, forks and dropping everything, pins and needles in the hands, not being able to pick things up......the list goes on and I still push myself to attend appointments, university, sort out my dad and working on The Psych Twins. Can't wait for the new additions from the things am waiting to hear about.( thats sarcasm by the way, just in case you missed it).

These are what I suffer from at the moment :
amputee with phantom limb pains and nerve damage
Fibromyalgia
sleep aneapa
chronic fatigue syndrome
Arthritis - rheumatoid and osteo
rynalds
circulation problems
IBS
depression
and waiting on news about heart and cancer......I think thats everything, comes to something when you cant remember everything you have been labeled with.

With everything going on with me and my family, the amount of famous people who are loved by society dying, the news is full of death, disasters and the government screwing us over even more,but trying to stay positive so looking forward to what is to come this year.

The Psych Twins will be attending Walker Stalker in February to do reviews for access, Newcastle comic con reviewing March, Hero conventions in Edinburgh in April reviewing access, Asylum 16 and City of Heros 2 promoting ourselves in May, Metro unleashed promoting ourselves in June and Screen Con in Tynemouth promoting ourselves in July and as long as there are no more financial disasters the main thing am looking forward to is my  three week holiday to Florida in the USA.

so even though reading through the list of aliments I have makes me wonder how I function or even get up at all, I still have things to look forward to. Now if I could just work out how to stay upright in the snow.....


Sunday, 24 January 2016

HAPPY NEW YEAR !... CAN I START AGAIN?

January is the same every year. No money , nothing to look forward to, dark nights, grey days etc etc. But people every where tend to make the same resolutions, new year new me, starting the gym, stopping smoking, going on a diet and my personal favorite, this year will be better.... well am still waiting. I have decided to put January as a trail and the New Year for me doesn't start until February,
( knowing my luck though this will persist until June or something and I sill be putting the previous 5 month as "just a trail").

As soon as the clock chimed midnight on the 31st it all went to pot.
Dad kicked off.
Stress levels through the roof
Arguments
Health issues escalated
And I ended up missing a deadline for the first time ever !

Dad was refusing his carers which resulted in more arguments between him and my sister, leading to my sister being more stressed out. On top of this he was forgetting to pay his bills becoming more and more in arrears with his electric and gas. He was refusing any form of personal care or hot food and decided to rip the telecare monitor out.

Thankfully I have managed to get his social worker to do a review of the services and he has agreed to paying his bills by direct debit which am arranging for him, the telecare has been reconnected ( although he is still refusing to wear the call button, but small steps.) and he has agreed to keep the carers for the morning and night who will help him with the porridge for breakfast and a sandwich for his supper. Still not winning on the personal care front but I am grateful for the small things at the moment. The one thing through out this that has really annoyed the hell out of me is the way that so called "care professionals" talk to the elderly, vulnerable and disabled. I noticed when she was talking it wasn't too my dad but at my dad, which I thought was horrendous and extremely disrespectful. He may have dementia but he is still a person. Whilst she was talking about him to his partner or to me it was if he wasn't in the room. His whole body language was sad, defeatist as if to say " I may as well not be here, no one listens to me". That got me thinking about how people talk to me. When am in the wheelchair, which fair enough is most of the time now, I get talked at or instead of asking me a question they ask who ever is pushing me, as if am invisible There is also a difference from when am in the wheelchair and out of it. I don't get talked at but I do get talked down to, as if because my legs are missing somehow this included my intelligence and being to understand anything. Talking to my sister the other night on the phone and she mentioned something similar. If her partner mentions that she has had a brain tumor or surgery people treat/talk to her differently .
Why?
Is this just lack of training on behalf of the professionals, or do they just become so worn down by seeing the same thing day in and day out that it is robotic and automatic? Is it just human nature to look down on the infirm and the disabled, see them some how as inferior, less then human. Is it a simple case that evolution dictates that we over look these people or try less as there is no gain, the genetics are faulty therefore we are over looked? ( see, told you I was studying psychology).

The cardiologist went well I thought. Heart trace was normal and no sign of a murmur and he is pretty certain that it is nothing linked to my talipes, ( people born with talipes can sometimes also have muscle issues in their legs, hip issues and/ or heart defects/issues). However it could be something called egtopic heartbeats or A.F ( arterial fibrillation?). So to rule anything out I have to have three tests carried out. One is a heart monitor for 72 hours, a echo gram of the heart and a ultrasound. So its going to be a few month of waiting before we get any final results. This of course means more stress and worry.( I do sometimes wonder if this might be payback for me labeling the heart the opposite way round during my physiology exam two year ago?).

Got the pain clinic appointment coming up in a few month, but to be honest do not see the point in going. Pain clinics tend to look at alternative ways of dealing with the pain to be used in conjunction or instead of pain killers. Tried them all before, didn't work then will not work now. So its back to the docs to look at upping the meds. Can't wait to see what that leads to !

Then to top things off, just as I thought nothing else could be thrown at me this year never mind this month I received a very unexpected letter. I have to go to the Northern Centre for Cancer to have genetic screening done. well, blow me down, ( trust me I said worse then that but am trying to keep this a 12 PA). So this will mean months of tests and waiting to see what the out come is. All of this just in time to return to university after the Christmas holidays for exams and deadlines. Not sure how this is going to impact on things or if I will even complete the degree .

Watch this space!

( I swear I should write a bloody book ! only problem is it would be put in the fiction section as no one would believe it. Soap operas have more realistic story lines then my life).

Sunday, 27 December 2015

THAT IN-BETWEEN STUFF

Christmas means different things to different people. To most it's supposed to be a time with family, to have fun, over eat and be jolly. What about the people it effects differently? The lonely, the people dealing with mental health issues and depression and the homeless.

Loneliness and depression effect different people in different ways. Having recently been diagnosed with depression this month and being put on anti depressants it is not something I would wish on anyone. Things just got on top of me and found it really difficult to cope. Between my health getting worse, issues with my heart, cancer scare and dealing with my dads dementia diagnosis's it all become too much and I ended taking time off university. It can be a very debilitating thing to experience. Feeling disjointed, empty, everything looks grey and muted.

The anti depressants that I have been put on for the last month are duloxetine. The main problem I am having with them is the drowsiness during the day and the limb pain. A night time is horrific. The phantom limb pain feels like a cross between pins and needles /numbness and electrical firing with small shards of glass digging into my legs. This feeling goes up from the end of my stump all the way to just below my knee.
Due to this, since starting the anti depressants I have yet to have a good full nights sleep which is draining to say the least.

I also hate to admit that I have to acknowledge how much the pain killers actually do help after running out of them this festive period. I suppose like most people I thought that I would be better off with out the pain killers, that they would be easy to give up if I wanted to because, hey what good did they do anyway? They didn't take the pain away, in fact taking smarties would have more use..so I thought. Like I said it wasn't until I went with out them all together for the last 4 days that I actually found out just how much of the pain they did dull. They might not take all of it away but they sure as hell tone it down. I felt like a junkie gagging for a fix when David came back with the prescription from the chemist.
On top of the phantom limb pain there was the bone pain, knees, elbows, back, hips and wrists with the arthritis not to mention the swelling and pain in all the joints such as fingers, neck etc, nerves, skin itching and sensitivity of the skin which is due to the Fibromyalgia...Yea fun festive season. However this didn't stop me from enjoying this Christmas, although it feels like it went really quickly. I was even brave and ventured into the town (which is unknown to me during the month of December full stop). This did not help the stress as on top of it being busy, the festive spirit in people seemed to be non existant. If you only got as tall as their waists as you where more seen as being in the way and I swear if I had to hear one more person tut behind me or loudly complain that I was in the way and they couldn't get where they wanted to be instantly, I would have went on a rolling rampage ! You would think if they had mouths big enough to complain very loudly to their shopping companions, they could open them to say "excuse me".
However in the New Year am at the chronic pain clinic and the cardiologist so lets see how that goes.

Despite all of this I have tried to stay positive and it helped that we where awarded a grant from Starbucks redcupcheer campaign. I know it sounds sad but I was so excited to find out The Psych Twins had won the money, I was bubbling with excitement.  We managed to speak to Sun FM who agreed to deliver some bags of shopping to a food bank for us on Christmas Eve. So the poor long suffering husband had to do the shop at Asda  and get the bags down to the radio station. We have also been able to help Age UK in Sunderland by putting hampers together for the New Year for them and Centre Point in Sunderland who support 16-21 year olds who are homeless, who we are going to buy things for again in the New Year.

So as life ebbs and flows around us so my life has it's usual ups and downs, and this festive period as been a variety bag of plus and minuses. The downside being the pain and depression but the up side being the good deeds we are going to be able to do for people and the help we can give through The Psych Twins. Michael and Georgia have been up for the week which was another huge plus and there are lots of things on the horizon for both The Amputee Diaries and The Psych Twins in 2016 but also more medical issues.

Stay strong and be true to yourselves and I wish all my readers a happy and safe New Year and look forward to blogging for you all in 2016 what ever it may bring my way I will make sure you are the first to know.