FA + Falling = Warzone

It is only Thursday afternoon and this week has been a bit of a warzone for me. FA has been getting the better of me, I have falling a few times mainly off the toilet when trying to get back into my wheelchair. Like today I totally over shot my wheelchair and face planted on to the cold floor. No major injuries just a few grazes and a bump to the head.  My mum and brother had to help me back into my wheelchair, I feel so silly when I fall and can’t get myself back up.

Afterwards my brother was asking me why I have a big problem with asking for help. I was trying to explain to him but he didn’t understand it, all I could say was that I get a huge rush of self gratification when I accomplish something on my own. I love the feeling, I guess you could say it’s my drug I am addicted. That’s why I prefer trying to do things myself, rather than asking for help.

Is it just me?? Am I the only FA or wheelchair user who feels like this?? Or is it some sort independent code that we disabled people have build into us??

This may sound a little crazy but I tend to feel more human and alive, knowing that I have accomplish something on my own doesn’t matter whether it’s big or small.

For now in my life with FA are getting harder do Yes I will admit that. (First time I have admitted it) so for as long as I can I still want to do the things I can do for now on my own. I know FA will get worse over time and it will come to the day where I will have to ask for the help for the most basic of tasks.  Trust me that is on  my mind every day and as always we will cross that bridge as and when I get to it, as for now hopefully that’s something  future Justin to deal with.  I’m just going to keep living my life doing the stuff I can and maybe asking for help with the stuff I can’t, see I am leaning baby steps :-).  

Here is a question I get asked a lot by fellow FA'ers

Here is a question I get asked a lot by fellow FA'ers, do your feet get cold in the winter. As winter is just around the corner I thought I’d take this time to let you in on what I do.

First off as FA has taken my ability to walk so my feet no longer have the movement they use to, which means blood dose not flow easy to my lower limbs (bad blood circulation) and my feet can turn a bluely/purple colour and sometimes feel like blocks of ice. Even though now I have had feet operations I still get cold feet and sometimes colder because of all the metal in my feet.

I have tried all the tricks in the book to get warm feet like the two pairs of socks, hot water bottle, thick socks/hiking socks the list goes on.

Post operations my feet were bad and use to get really cold and turn blue/purple quick, now after the ops they still do get cold and that it just takes longer. My right foot is better now were they had  to do the flap surgery (Flap surgery is a technique in plastic and reconstructive surgery where any type of tissue is lifted from a donor site and moved to a recipient site with an intact blood supply. This is similar to but different from a graft, which does not have an intact blood supply and therefore relies on growth of new blood vessels. This is done to fill a defect such as a wound resulting from injury or surgery when the remaining tissue is unable to support a graft, or to rebuild more complex anatomic structures such as breast or jaw. The skin can be divided into 3 main layers including the epidermis, the dermis, and the subcutaneous tissue. Blood is supplied to the skin mainly by two networks of blood vessels. The deep network lies between the dermis and the subcutaneous tissue, while the shallow network lies within the papillary layer of the dermis.The epidermis is supplied by diffusion from this shallow network and both networks are supplied by collaterals, and by perforating arteries that bring blood from deeper layers either between muscles (septocutaneous perforators) or through muscles (musculocutaneous perforators). This redundant and robust blood supply is important in flap surgery because part of the supply will be cut off. The remaining blood supply must then keep the tissue alive until a more optimal supply can be restored through angiogenesis.
An angiosome is a three-dimensional region of tissue that is supplied by a single artery and can include skin, soft tissue, and bone. Adjacent angiosomes are connected by narrower choke vessels and so multiple angiosomes can be supplied by a single artery. Knowledge of these supply arteries and their associated angiosomes is useful in planning the location, size, and shape of a flap)
A lot of work went in to rebuilding my right foot and because they took my main artery in thigh to put in my right foot it now had much better blood circulation than my left foot.

Here we go I have two ways to getting warm feet, one is a quick fix and one is the long route.

1.      The quick fix

A few Christmas's ago my mum and her friend Jackie get me these microwaveable stuffed animals, now the animals are not important it’s the sacks inside them that it. All you need for this quick little fix is 2 of them sacks, some over the top big novelty slippers and a microwave. (I will include a photo of the set up) You cook the sacks up in the microwave for 1 minute (I love how I sound like a blue peter presenters here or a drug lord hahahaha) and after the 1 minute pop them in to your slippers and relax. They will keep your feet warm for about15-30mins it’s really nice like having a personal fire under your feet.

2.      The long Route

It’s actually really easy just put your feet up; elevation is the key to help the blood flow to your lower limbs. Whenever you are not busy get your feet up for 5,10-15mins and it will help. Sit on the sofa and get your feet up, or get a foot rest/puffa anything to get them feet up trust me it will help.

Jimmy Eat World Live at the O2 Academy in Bournemouth

Jimmy Eat World last night Live at the O2 Academy in Bournemouth was Amazing.  Jim Adkins the lead singer puts so much energy in the performance it was a great thing to witness and be a part of.  Lots of people around me looked they were enjoying them self’s too, the support was alright too   Little Matador they were called. I hope Jimmy Eat World return to Bournemouth soon.

The only bad bit of the night was a few rude and inconsiderate people, who can clearly see that I am a wheelchair user but still insets on standing in front on me to take a pic/video (and I’m like hey fucker I paid to be here to and yes I would like to see the band so move your arse) I do love it in the  O2 Academy in Bournemouth the place is beautiful on the inside (just take a look at this picture how can you love a place that looks like this)

I wish the O2 Academy in Bournemouth could get a lift in there so wheelchair users and fellow people who can’t use the stairs could use the upper balcony. As the O2 Academy Bournemouth is a Grade II listed building “Listing means there will be extra control over what changes can be made to a building's interior and exterior. Owners will need to apply for Listed Building Consent for most types of work that affect the 'special architectural or historic interest'.

I don’t think they could do anything about it, or how some people are at a gig for that matter.

All in all it was a was a fun night :-).

New Tattoo

Last Wednesday the 30^th of October I had a new tattoo done. IF had a heart in a coffin, with the words still beating and wings made up of bones. I’ve really want to get this tattoo for quite some time now.

It’s on my chest and it’s not finished yet, the reason why I wanted to get this tattoo done. With FA comes Cardiomyopathy and I have it which means my heart muscles thicken, so the heart in the coffin and the words still beating are a metaphor to say as long as my heart is still beating I’m going to still be here fighting and kicking ass. We added the wings made up of bones to give it that wow factor and make it stand out. My tattoo is 1 week old today and I love it and I’m so looking forward to getting it finished.

                                                                                                                                                                                      

The tattoo artist was Emma Garrard  

http://www.emmagarrardtattoo.co.uk/

https://www.facebook.com/www.livingartcollecti

And i am off in a few hours to see Jimmy Eat World Live i'm Super Excited been wanting to see them live for years and tonight i am. 

My Abdomen Scan

Today I had Hospital again and this time it was for the scan on my abdomen. I jumped on the bed and the lifted my t-shirt up, Then the Doctor put the gel on my stomach and swathed the lights off grabbed his magic wand looking thing from the scan machine, and began to look inside my stomach.  

After about 20 minutes of me turning from side to side, holding me breath in and out the Doctor finished the scan.  Then the Doctor told me you have a few Gallstones and a Enlarged Spleen, two spate things going on.

What are gallstones?

Gallstones occur when bile, which is normally fluid, forms stones. Gallstones commonly contain lumps of fatty (cholesterol-like) material that has solidified and hardened. Sometimes bile pigments or calcium deposits form gallstones. Sometimes just a few small stones are formed; sometimes a great many. Occasionally, just one large stone is formed.

What is the spleen and what causes an enlarged spleen (splenomegaly)? 

The spleen sits under your rib cage in the upper left part of your abdomen toward your back. It is an organ that is part of the lymph system and works as a drainage network that defends your body against infection.

White blood cells produced in the spleen engulf bacteria, dead tissue, and foreign matter, removing them from the blood as blood passes through it. The spleen also maintains healthy red and white blood cells and platelets; platelets help your blood clot. The spleen filters blood, removing abnormal blood cells from the bloodstream.

A spleen is normally about the size of your fist. A doctor usually can't feel it during an exam. But diseases can cause it to swell and become many times its normal size. Because the spleen is involved in many functions, many conditions may affect it. 

An enlarged spleen is not always a sign of a problem. When a spleen becomes enlarged, though, it often means it has been doing its job but has become overactive. For example, sometimes the spleen is overactive in removing and destroying blood cells. This is called hypersplenism. It can happen for many reasons, including problems with too many platelets and other disorders of the blood.

Causes of an Enlarged Spleen

An enlarged spleen can be caused by infections, cirrhosis and other liver diseases, blood diseases characterized by abnormal blood cells, problems with the lymph system, or other conditions.

I will have wait till I see my Doctor next to see where we go from here, but having read up a little on these two things. It said gallstones can come on by rapid weight loss, and as for the enlarged spleen maybe it’s enlarged because of FA. It said  a spleen can enlarge its  self by overworking and the spleen fights of infections, and when I was in Hospital for the first operation I lost a lot weight rapidly and had a big infection in my foot. Now I’m not saying this is what has caused both things but it’s something to think about, and to discuss further with my Doctor when I see her next.