FULL STEAM AHEAD

Another 5 month have passed since I last put anything down for you.  Its now the beginning of December and I have now been at College for 2 1/2 months.......and I LOVE IT !!

I promise I will try to update this blog every month with what is going on in my life, difficulties I have experienced and help I have found or help I have had that worked for me.

First things first, still no further forward with getting out of the wheelchair. The cold weather is playing havoc with the arthritis and the fibromyalgia. The weight gain has slowed down but still not good, so I am personally not very happy about that. I am still experiencing issues with the stumps splitting and it is the same one that splits all the time. It has now happened twice more since my last entry. I know it is due to the legs swelling and the weight gain so the plan is to try and control this. So although we are only 23 days away from Christmas, I am going to restart the exercise routine and cut out the snacking on a night time. Yes I will indulge during the three days of the 24th 25th and 26th but that's OK as long as it is controlled, and that is going to be the key for me control. Went to a seminar about weight loss surgery which was recommended by my GP but it scared me silly, the risks where way too much and the surgeon didn't even think it would benefit me due to the Fibro, so I don't think that is an option for me. Although any one who does go through it is brave in my books.  The results are due from the sleep clinic in a few weeks so will try to update the blog with that before Christmas and still waiting for my MRI to take place.

And that is where we are up to with the health situation..now for the good bit...my life.

Can I say the best thing I ever did was leaving the rat race to go to University.

I am doing a extended degree in Psychology through Sunderland university, the first year is with Sunderland College. As a disabled student as well as a wheelchair user, the help I have had form both the college staff, lectures and the University has been outstanding! The support as well, that I have received from the DSA of student finance as well has helped me so much am extremely grateful.  They have provided me with the equipment to enable me to actively take part in all the lessons and the ability to complete work at home as well.
 I will be honest I was really worried about going to University/college as I was nervous about how much I would stick out like a sore thumb, or how much trouble it would be for others to include me,even how much disruption I would cause to the lesson. Questions such as "would i be left on my own?" "would any one want to mix with me or even do projects together?" " would I be seen as an outsider/ inconvenience?" " would people talk to me and accept me for who I am?""would I be nothing but a nuisance to people? "
Its bizarre the way you think about yourself or see your self when you are in a wheelchair or have limbs missing, its like a double whammy when it is both.  But all the worry was for nothing. Don't get me wrong not everything has ran smoothly, there are a few issues with doors for example and some kerb heights, getting under some of the desks  are a bit of a night mare and some rooms are so small , forget about a turning circle!  And if I have to leave my legs off and use my stump boards then college is just a no go. Hell I even had one of my foot rests ran over by a taxi driver..twice! guess the first time he wasn't certain he got it.  I guess there was a chance that all my fears could have been founded but it depends on how you want to few things.

 Just before starting university I was having a course of CBT (cognitive behaviour therapy), which helps you to help yourself. Basically it changes the way you few the problem or issue and how you view it, makes you challenge your view point, then gives you the tools to deal with it in future.  At first I thought it wasn't helping, but after a few sessions things changed in my head, and I realized that my view of myself and how I thought people saw me was skewed .
 Yes, OK there is going to be people out there who are ignorant gits, who do see you as an inconvenience and should just go away, but thankfully they are few and far between. They will be a certain amount of changes that will need to be made to include you, but that's OK, you are entitled to access the same as everyone else and most people understand this and are patient. Those that aren't, screw them, take longer just to annoy them lol. The point is that is their hang up/problem not yours and don't let them put their hang ups onto you, after all their not out of the race called life yet and who knows what the future holds.

I guess what am trying to say is don't let anything hold you back. If going to work or college or university is what you want to do then do it. There is support and help there to access such as the DSA (Disabled Student Access) through Student Finance, the college/University or work place itself, also if it is work connected there is the Disability Advisers at the job center and Access to Work who can help with everything form transport, office equipment and grants your employer may be entitled to, work place evaluations as well.

On a personal note things are going well. Still counting down to Florida 2014 and now Christmas. Thank god am all done. As some one who is disabled and in a wheelchair shopping in any mall, shopping centre or town centre is a bloody nightmare !. People seem to suddenly become blinkered, rude and ignorant. On line shopping is a god send.When I do have to go into town at the moment my temper seems to instantly shoot through the roof. Sick of people leaning over me, stepping back into me (although it hurts them more then me but the number of people that I have nearly had sitting on my knee...), stepping in front of me then glare at me as if it is my fault, and my personal favourite, tutting at me..for being there. All the kids are doing well and for the first  time in 10 year I was able to attend two of my children's class assembly's . What a proud mam moment that was.The eldest is doing well at University as well and cant wait to see him when he comes up for Christmas. Had some of my first assignments back and scored 80% for my Physiology report, 49% for my first maths exam, 96% for my word processing exam, 100% for my PowerPoint exam and still waiting for my result from my presentation assessment and my spread sheet exam.

My goal with this degree is to specialise in possibly CBT my self and become a Psychotherapist, all going well after my degree I will be looking to do a PHD as well. So remember if you are in a wheelchair, Amputee, friend or family member of an amputee, even if you are curious and just need answers please feel free to contact me via this blog or my face book page. All links will be put at the bottom of this entry.

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

https://www.gov.uk/student-finance/overview

http://www.yourdsa.com/

http://www.sfengland.slc.co.uk/media/559155/sfe_dsa_1314_d.pd

TIME APART

It has been four month since I last wrote anything. To be honest I didn't see the point or writing unless there was something to write about and the last four month to some degree has been the same old same old....
However saying that certain things have happened.

Still trying to battle with the Fibromyalgia which has included and not limited to CB Therapy which didn't work for me, upping my exercise, changing my diet, playing around with the pain killers and just in case some herbal remedies.  So far the attacks are not as often unless I do something really silly like write, hold a book for too long or try to bake (Easter saw me laid up for over a week!)Still waiting on the Sleep clinic, off to there next week so lets see what happens.

With regards to my personal life I have re booked Disney for next year and I am happy to say that I have got my place at university to study Psychology in September.

 However as a disabled student I am still trying to get the college I am doing the first year with to complete a questionnaire I need done to enable me to be assessed by the University for the help I will  need whilst there.  I am glad to have something to look forward too as I am sick and  tired of being out of work even though I know it can not be helped.  I really don't understand how some people actually like this kind of life!  David is still working hard with his photography and my eldest is due to leave to go Staffordshire University in September. My eldest daughter is achieving well at school and I am very proud of both of them. I am unsure if I have mentioned this before but my youngest son Tyler has been diagnosed with ASD(autism Spectrum Disorder), which has proved to be challenging but very rewarding at the same time. It looks like last years trip to Florida helped him to adjust and accept certain things better so hence the reason why we have booked again, even if it kills me or breaks me, we are going back if it means it will benefit him.  Not to mention the brilliant time we all have as a family.
We have been told it is more social interaction that he has the issues with and is 2 year ahead in maths and reading then his year group/age and could sit his SATa now.  He is 98th percentile when it comes to using and understanding context and grammar of language....in other words he is a smart arse :)

The biggest thrill for me so far has been when I was asked to do a screen test  for a major film role but it is all hush hush so can say no more, but how many people get a chance to even do that, it was one hell of an experience !

Things with rehab and the amputation have came to a screeching halt am afraid.  Was trying to up the anti with the walking and being more independent (due to the fibro I can no longer self propell in the chair) and was using the recent nice weather to  try walking and physio in the park. It looks like I have developed a pressure point though.  Woke up 2 days ago, put my legs on, went to the bathroom (ooh which I forgot to tell you has now been fully adapted, we paid for all the decoration, the council paid for the adaptations)and when I took my legs back off it was bleeding right next to  my scar. After trying to get some information on what had happened and how to manage it (GPs as usual wanted nothing to do with it as it was down to my amputation and the district nurse couldn't do anything or suggest anything to do as it was not an open wound),  it looks like a problem with the legs so I need to go to the Freemans...but there is a problem you see....they will take my legs off me due to the fact am overweight for them.

Great choice eh? lose the legs, become totally housebound again (screwing up uni), and be a fat bird in a chair with less chance of losing weight (how do you lose weight when you can't get out of a sodden wheelchair?), or say nowt, wait for the pressure point to(hopefully) heal and keep trying to lose weight by exercise as well as diet (without starving yourself),praying the pressure point doesn't come back or get infected?

I am starting to wonder what help there is for amputees in the UK, or more specifically in the North East of England.  My experience's so far are not good. There seems to be no support network, or places to go to find out answers to everyday questions concerning pressure points or weight /exercise problems for example. It is very much a case of being bounced around from the doctors, nurses,limb centre,walk in centres and physio with many of them either unwilling to deal with you or just no understanding of what you are experiencing.

LIFE GOES ON

So not coping too well with the staying at home thing until my health is better.

Applied for a job today, just local and part time but lets see how it goes. Other then that still waiting to hear from the rheumatologist, as still need the ultra sound on my hands and the results from the x rays and bloods.
In the mean time I have opted to down grade from the morphine back to Tramadol for pain relief.  Unfortunately this doesn't work as well as the others but it gives some relief and I am hoping along with the Amitriptyline and the sleep clinic and therapy, it works.

Still doing the physiotherapy in the mornings, now up to 45 minutes each time but  without them I have a lot of pain and great difficulty in moving.  Some mornings I can't. So at least the exercise keeps me moving... literally

This is where are hoping to stay the next time we go to Florida.  The weather there was amazing and really helped  my legs and arthritis  This was when I noticed how bad things had got.  Whilst in Florida not only did the aches disappear but my mobility increased dramatically. Upon return to the UK it seemed to hit me in a matter of days.  Not only did the pains come back ten fold but my mobility suddenly dropped.

The  stumps are not doing so well either, due ton so if swelling and circulation issues. Will eventually have to bite the bullet and go back to the limb centre to be remeasured and re fitted for my legs. The only concern is that due to my considerable weight gain I may not be able to wear prosthetics. Trying to lose the weight should be easy in my mind, but as most of you are already aware of, not so easy in reality. But lets keep trying. I was once told by my granddad that you get out of life what you put in so if you give 110% you will get 110% back. So every day I start again and try.

HOW TIME FLY'S WHEN YOUR HAVING FUN....NOT

Well it is hard to believe that 5 month has gone by.

The road I have been  on has been a bumpy one to say the least, with lots of twists and turns along the way. The first thing I guess would be to mention what happened at the tribunal.  Well I lost but not after proving my point and making them very uncomfortable.  They turned up 6 suited and booted to my three, they had a lawyer I couldn't afford one so represented myself. His statements where contradicting and he even tried to say that I was in a wheelchair prior to this amputation which is untrue. Although I lost it felt really good to be able to take a stand for myself for a change and not be intimidated to back down.  The holiday was excellent!! Best thing ever and just what the doctor ordered for me.  Although the legs did blister and I had to spend at least one day with out my legs on, it did not put me off  from having fun and I have to say all the staff at the hotel and theme parks where very helpful so a big thank you and well done to Disney world. In fact they where so helpful that when we turned up we found out that they had put us on the second floor, bearing in mind I still cant do stairs. They immediately changed that for us and because the rooms where not wheelchair accessible ( although they where still roomy enough for me to get in and maneuver with my wheelchair) they provided a bath seat for me to use. The flight staff where brilliant with Thompson's as well we booked in premium economy for the extra leg room and it made all the difference to me. They where great with the wheelchair and the assistance on  and off the plane, getting rid of all the fears I had.  In fact I enjoyed the holiday so much we are planning to go back next year. Nearly all the rides where wheelchair or disabled access and everywhere we ate very accommodating  in fact so where all the shops and transport as well.

However, on my return things took a  turn for the worse.  Within two weeks of being back in the UK I started suffering with pains in my hands, fingers,wrists, shoulders and back. This was annoying to say the least as in Florida it had not effected me in fact the sunshine and the heat helped to improve my mobility greatly. Within a very short period of time I ended up on the sick and have since had to leave work altogether.  The doctors checked for rheumatoid arthritis as I already knew I had arthritis just not what type, but this came back negative.   I have tried liquid morphine, zoramorph and oxycontin which just ended up in server side effects and a lot of time staring at walls!
In the end I was referred to a rheumatologist at the hospital who thinks I may suffer from Fibromyalgia that is also causing chronic fatigue syndrome. To make sure they have x rayed my hands, taken more bloods and I am awaiting a ultra sound as well. Unfortunately this is something I will have for the rest of my life but symptoms can be elevated with exercise, help with sleep and medication as well as less stress and relaxation ( 6 kids(one being a hormonal teen), one dog, one cat and two kittens..really? they think I can cut stress out and relax). So the plan is they want me to attend a sleep clinic and start taking amitriptyline.  I already exercise every day due to the physio  I do and I am looking at ways to loose weight, so cross your fingers (cause I can't ) that it works.  I am hoping to get back to work once the pain of this is under control. Obviously the knock on effect it is having with my walking as using the crutches or wheeling myself around is extremely painful and it also can be connected to the pain I have in my stumps.
So at the moment  I am waiting to hear from the dole regarding ESA and have applied to University to study Psychology so hoping that comes through.
OOh before I go another thing to add to the list of things wrong I also have a stomach ulcer.....my life is great  :)