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Sunday, 17 May 2015

A DAY OF RECKONING IS COMING

Still have no trainer to get me into shape for the Great North Run in 2016 so it looks like am going to be kicking my own arse for it.
Went to get weighed so I could have an idea of my starting weight . SO not happy! 21st 11lb. What happened? So have bought Asdas version of Slim Fast . finding it difficult but persevering. My snacking has stopped so have the biscuits and coffees ,but yes you guessed it , not so much the crisps which are my nemesis. Not crisps really these Fish n Chip biscuit things, really bad addiction to them but managed to cut down to only having them twice this week instead of every day so YEAH go me!
Re started my physio in a morning as well as light weights for my arms ( apparently exercise is supposed to help Fibro....still waiting for that one to kick in), sit to stands from the wheelchair to strengthen my legs and back. Had my first go on the treadmill as well. Worried I was going to fall flat  on my face but it went OK so starting that from next week.

So what has this last week brought me? lots not all good either. Took part in a study for a student at Oxford University which was really interesting and glad I did that. I have had an article published as a personal story for this blog in Disability Today which is an online site and there is the possibility of talking to new students in the new term taking on the level 0 of Psychology. this is to share my experience of the course, explain what happens at University once you get there, such as volunteering, society's and what to expect as well as doing Q&A sessions with them.
Mikey came home from Stafford University last Tuesday which was great.The kids are really happy to have him home as are me and his dad. Bless at the moment he is relegated to the couch as we have no room for him but when the summer holidays start anna is giving up her room for a while for him. Tylers SATS went well and he quite enjoyed them..strange boy and Anna has her prom this weekend so handbag and shoe buying was on the cards this week as well as booking the salon for her hair and nails.

Now the not so good news. Got a letter back from DWP and I have an assessment with ATOS on the 3rd of June. This should be interesting. They have asked for all my tablets and aids.... no room in the car for everything I need for help on a day to day basis and even if there was the assessment room would not be big enough. Worried about attending, people keep telling me that they should be no reason why I would lose it but hey this is the DWP who can say what they are going to do. I have heard stories of people who have lost the money and worse then me.Losing it would have a huge negative impact on my life and make me more of a recluse then I am already. At the moment other then Uni and drs/hospital appointments and possibly one day a week in the town I do not go out. I socialize....well ....I don't really. People tend not to ask me too and when David and I do get to go out to the pictures it is once in a blue moon to be honest.
Ended up at the Doctors as the Tramadol is no longer working and have been given more tablets to take along side the paracetamol and the Tramadol which are Nefopam 30mg. Have to start off on one tablet a day then slowly increase until am on 3 a day. So far experienced  a bad stomach, nausea and a slight euphoric feeling but no help with the pain. The doctor has told me that eventually, whether I want to or not , I will have to go onto the hard core tablets full time. That means not being able to function during the day. Not sure what impact this will have on my plans but hopefully I can stay off them long enough to carry out what I want to do.
Also having to have a blood test and an ultra sound on my underarm as they may be a lump. The worrying thing is that Cancer is big in our family my sister and niece have both been affected in various ways including breast and cervix cancer and my mother died of cancer of the stomach. Better to be safe then sorry I suppose but it is still worrying times. Also having to get in touch with the Genetics center at Newcastle to see if am predisposed to it. Still awaiting an ultra sound on my stumps about narrowing veins and hospital appointment to have my neck, shoulders and back checked out . Not good times.
could not talk to the doctor about every thing I need to as my anxiety and depression my be on the raise again but I had not made a double appointment and was told I would have to go back another time to discuss them. On top of all of this my dad has to have an MRI on Monday as he may have a form of dementia. The thing is he is now getting abusive to my older sister Maureen, but does not even know who I am...don't know which is worse to be honest. How would you feel if you mother was dead and your father did not know who you where and just thought you where some strange women?

To round the week off went into town on Wednesday and when in HMV was treat like a child by the sales assistant. I was so embarrassed that I honestly did not know what to say. I thought I had gotten over the whole self conscious thing and feeling insecure, lack of self confidence,but the way this woman treat me has really made me feel that way again, Its surprising how one little thing done or said that might not have been meant as anything in particular, or not even a conscious thing by the person, can have such a huge negative impact on some one.

However lets end this on a good point. Showmasters got back to me and they have refunded Davids tickets as they do carers passes and have sent me an email with all the information on  that will help me with getting around Comic Con in London ! So much help am over the moon and it has really stopped me stressing about going out of my comfort zone. Now am just looking forward to it. Still not sure to cos-play or what as so any thoughts on this would be great.

Don't forget if you want to talk to me, ask a question, need advice or some one to talk to there are several ways to get in touch. All you need to do is copy and past the link into your browser or click on it.

My facebook page  https://www.facebook.com/theamputeediaries

The Psych Twins Facebook  please follow us on Facebook

https://twitter.com/greebo89  My twitter

https://twitter.com/psychtwins The Psych Twins twitter please follow

For news and help check out our website  http://thepsychtwins.bravesites.com/




Sunday, 10 May 2015

The dust settles and we move on

So the dust is still settling after the general election in the UK. Saying that people are not happy is a bit of an understatement. It does make me wonder what is going to happen for the majority of people, like myself , pensioners and working families over the next five years.
Food banks are now popping up every where and its not just the jobless who are having to rely on them more and more. Disabled people who have had their benefits cut and families who even though they work, are still on or below the bread line.
It makes me ask the question, what experience have these political think tanks have of the real world? The issues that low payed working families or disabled people may face on a daily basis? The same with the Prime Minister, who was bred for a political career, never held a 9 - 5 job for a pittance on a zero hour contract. Didn't have to make the choice between putting the gas or the electric on this week or go through the humiliation of being told what he could do , afford and buy. What I found ironic was it was 70 years since VE day, and on that day we handed the country back over to a government that is turning more and more into a dictator ship,plunging this country back into the dark ages of poor/work houses and making the class divide even greater. It seems to make a mockery of what our predecessors fought for.

But enough of this political rant. It does however worry me about how the changes in benefits for disabled and the selling off of the NHS will effect me and mine. I have sent off my PIP form last week and now have a nervous wait to see if I need to attend a consultation. Not only was it depressing to fill in the form, well you don't normally stop to think how these things effect you on a daily basis , it is not ideal for trying to explain every thing. You are not even guaranteed a medical professional to access you during a consultation. So how the hell are these people going to have a clue what it is like to live with no legs for example? never mind every thing else. Now am not saying we don't need something in place. Unfortunately, due to the small few who do take advantage of the system, we need some kind of process, But surely during the consultation it should be a medical professional such as a GP or consultant and some one who has first hand experience of that disability? Example for me an amputee or they have a family member who is or they suffer  with fibro? with me?

That aside it has been a mixed bag since the last post. First exam out of the way. Stayed very calm and am quietly confident that I got at least a pass. The things that where put in place where great and helped a lot. My own room, lap top and the extra time made the difference for me. Next exam is tomorrow so fingers crossed.

Booked hotel rooms for me and Annabelle to attend Asylum 16 next May. Its a Supernatural convention in Birmingham. Gutted I missed it this month as the actors who play Crowley, Dean and Sam are here. But still got the London Film and Comic Con to look forward to yet, One day hoping to get to Sand Diego Comic Con.

Still looking for another star to attend our Monster Masquerade Ball, so any one famous reading this please get in contact lol. Set up a website for The Psych Twins as well so will be building on that over the summer months . Hoping it will be a source of support and information for any one who is disabled or has a family member who is or suffers from a metal health issue.

 Agreed to do the Great North Run in 2016. Why do I do this to my self? Anyway still looking for a trainer to help with the fitness thing and we have decided to run it as Patsy and Eddie from AB FAB. You might be asking why we are doing this? Good question ! The Psych Twins would like to open a center  in the North East that will offer people support, advice and information to any one disabled or family member of some one disabled as well as parents with children who have ASD or ADHD. 
The vision is that people could pop in for a coffee chat to peers who are going through the same thing, find out what events are on that are suitable, what help is available, help with filling in forms and get advice as well as a counselling/ therapy service for any one who needs one to one help.
I also see us running a play group once a week for parents of children who have ASD/ADHD so while the parents are having a  coffee a break and able to exchange tips and advice with their peers, the children are in a sensory room  and organizing events for families to attend. Big dreams I know.

On a personal level I have started up the exercise routine again and going to get David to show me how to use the treadmill . Also having another go at the slim fast diet again so fingers crossed.  Hopefully I will pass onto the second year at campus because there is so much I want to do. After getting the degree,as long as it is a 2:1 I will be accredited by the BPS and then the plan is to move to Teeside University to do my doctorate in counselling Psychology so I can be registered and practice CBT. After that maybe sit my licence to practice in Florida. Who knows?

Big plans, Big dreams but back to earth at least until the next two exams are over with lol.

So links that might help. Remember if you can not click them here then copy and past it into your browser/ new tab.

https://www.facebook.com/psychtwinsfundraising?ref=hl   Our Facebook Page please like and share

http://thepsychtwins.bravesites.com/     Our website please share

https://twitter.com/psychtwins          Find us on Twitter

https://www.facebook.com/events/417935758373799/   for info on the Masquerade Ball

If you need to talk or need advice please contact me here or on any of the above



Saturday, 2 May 2015

ASSESSMENTS, EXAMS AND STRESS !

May is the season of those all dreaded exams !......well it is for me.

Coming to the end of my second year of a four year extended degree course in Psychology. The time has gone so quickly. It seems like only two minutes ago I was all wide eyed and eager to be on campus . Now I feel like a veteran fighter of SPSS software, Research papers , Journals and library books. Don't even get me started about he referencing !

I am happy with the progress that I have made this year but the attendance is a bit of a let down. Understandable considering that I have been dealing with personal issues, stump splitting and other health issues that have plagued me more this year then last. But if I have managed to get the results I have off the attendance I have had for this year then next year they will be even better.

Preparations have gone well and I have actually managed to get some decent revision time in. I have been sent my exam timetable where I have been given extra time , PC use and a scribe if necessary. This has greatly put my mind at ease.

Another area of assessment was for an electric wheelchair. I was referred by the Disabled Service Center at the Freeman's. But this has took at least four month for an appointment to come through in order to be seen. I ended up having to miss University as it was an all day appointment. They could not give me an actual time that they would be coming out. Well after waiting all day they came out and the assessment was over and done with in five minutes. I have to wait 3 month to find out if I qualify then two month to get an appointment to try one out then another 2 month before i get one. But here is the downside. It can be lifted into a vehicle and it cant be folded down to go in a boot. So what ever car I use mine or a taxi has to have ramps that I have to maneuver the wheelchair up. After my track record of wheelchair ramps with Station taxis and various others, including my close call with ending up in hospital because one taxi company dropped me off the side at the top of  a pair of these ramps, well, lets just say am not convinced it will be beneficial or indeed useful for me.

Still no news on being referred for a scan on my legs and stumps for blocked vessels or issues. If you remember this was due to the splitting of the stumps and the lack of colour and how cold the legs where becoming. Put it this way they would be warmer sometimes being stuck in the freezer at -30.

But an assessment of another type has been received. The dreaded  PIP !!!!! da da daaaaaa!!!

So finally it is my chance to go through the process of the PIP reassessment for my DLA. This should be interesting . Now there has been a lot of horror story's going around about being assessed for this such as people losing there benefits, being asked if limbs will grow back. being told they are capable for work or not being told that they qualify for mobility for a car. So I have two large booklets to fill in , trying to explain to some one who might have no medical experience what so ever that no matter how many times the form asks, no I can not walk with out my prosthesis, yes that means I can't climb stairs, no my wheelchair does not turn me into a darlek meaning I can now do steps etc by flying. Oh and no, they are not going to grow back anytime soon.

But although this is a stressful month there is light at the end of the tunnel. One point of light is I have re booked Disney for three weeks this time next October. This is booked through Jetsave so lets see how they compare to Thompson. The assistance form leaves a lot to be desired so reserving judgement on the rest. This time trying a deluxe resort at the Wilderness lodge. So considering we had excellent service from a value hotel and a moderate hotel from Disney, I am expecting this to blow my mind.
A second light is that we are definatley going to London Film and Comic Con at the Olympia this July. I am nervous about this as I have no idea what the facilities for wheelchair users are. Looked at the layout of the exhibition center and seems easy enough but lets wait and see. Getting cars to take us down as am not brave enough yet to try British rail lol. Staying at the Olympia Hilton that has been booked online and have stated that am a wheelchair user so again lets see what happens. Showmasters as yet have not replied to any communications regarding disabled issues etc. tut tut.So this is me going out of my comfort zone. Watch this space for feed back on both of these things.

Also looking at trying to get people together to do gishwhes which is a world scavenger hunt and hoping to get tickets to Asylum 16 which is a Supernatural convention. Watch this space as well as me and Jo have opted to do The Great North Run in 2016 dressed as......wait for it.......AB FAB ! am Eddy of course :)  This is in order to raise funds for The Psych Twins so we can open a center to offer support, advice and counselling for disabled people and their families including families of children with ADHD and ASD. A news article to follow on this soon.

Here are some links all you need to do is copy and paste them into your browser:

https://www.facebook.com/theamputeediaries

https://www.facebook.com/psychtwinsfundraising?ref=tn_tnmn

https://gishwhes.com/

https://twitter.com/greebo89

http://www.showmastersevents.com/

So no pressure then......