Monday, 5 March 2018

feeling rough maybe it's the weather

A couple of weeks back I had several days in bed. I just couldn't face the world, I didn't have the energy to get out of bed. Since then I have not been feeling to great. I know I was depressed but why. I have a loving wife and family my needs are top priority and I don't go short on anything. (money?) It must be hard for my brain to work out that my body just will not work. And often what I could do yesterday I cannot do today. But try again tomorrow or next week it might! Odd I know but that's the way it is. As I lay here now waiting for Heather to get me up it all seems so natural but when trying to struggle to hook the hoist or press the remote to raise me up and my thin is not strong enough it's frustrating both go me and go Heather. She is literally watching me deteriorate. I used to literally run across roofs I was an invincible roof tiller. But now I can't even stand up I have to be hoisted in and out of the wheelchair and virtually every single thing is done for me. Yet maybe soon Multiple Sclerosis will be beaten. Probably to late for me but if I was cured I would only go and walk bare foot on some grass hand in hand with Heather. Or along one of Thanets many sandy beaches. My pleasures are small but right now unattainable and that is the depressing part.

Thursday, 1 March 2018

Promote Thanet: POW! Thanet 2018: Female Young Musicians’ Drop In

Promote Thanet: POW! Thanet 2018: Female Young Musicians’ Drop In: Are you a female between the ages of 14-21 interested in music? Want to find out more about making a career out of music? Needing a confi...

Wednesday, 28 February 2018

Catheter change on time

Yesterday I had My catheter change and it was on time! No surprise there then we'll actually yes it did surprise me, most times it is about a week late and only done after several phone calls. Something that is so routine after all before the nurse leaves she gives me the date it is due. But out of what I imagine is a period of ten years. Very few have ever been done when the nurse said it would BUT the last three times have been done on time and with no problems!
After all of those years and countless changes (I can work it out 10x6 =60) finally the system seems to be working. I never in that time moaned those girls all do a fantastic job and earn every penny they get! But it has amazed me that it has taken so long to turn up on the booked day.

Monday, 26 February 2018

Multiple Sclerosis just keeps on giving plus a bit of mental illness thrown in for good measure!

Great I try as hard as possible to live a normal life! I have a supra pubic catheter so I don't pee myself. I have a wheelchair so I can get around as safely as possible but even with that I have managed to fall out on different occasions. I wear leg braces to stop my legs from tying themselves is odd shapes because the muscles have shrunk and because I can no longer stand they will never revert back. Great. Tomorrow I have a hospital appointment to get some night splints because of reasons stated above. I try and plan for excursions away from home like the trip tomorrow. Normally I would have opened my bowels today. But no chance this morning nada zilch zero. Great I have to use a peristeen irrigation system. Basically squirt water into my bum and when it comes out so does my poo, but not today. Then I stress which improves the situation tremendously!
Tomorrow will be here soon enough but I doubt I will sleep tonight worrying about going out tomorrow, will I go will I be all right, will I poo myself will I this will I that. Resulting in me being so fatigued if I do manage to get there I will be knackered.  Plus now it is snowing, will the roads be okay. Will the treatment person manage to get to work? I know have a thousand things going round in my head! Normally I can just about making a choice between tea or coffee, normally it would be coffee but we have just started having fruit teas now they have entered the equation I am doomed. All this shit is bouncing about and no sign it's going to stop.
Before I came to bed I did some colouring it destresses me but not to night oh no. And can I take a tablet NO. I am on the maximum dose of my antidepressant tablets so that just leave painkillers. They might take the edge off this maelstrom whirling round and round but guess what ? Heather has settled down for a good night's sleep and I don't have any painkillers near me and I cannot get out of bed to get more without Heather. She is gently snoring in her own bed. GREAT.welcome to mental illness Don. So much for getting a good night's sleep. So much for being a grown up. I HATE MY MS it sucks. GOODNIGHT stop shouting to myself I am here no need to think so loudly.

Unseen disabilities, not every disability Is visible

When I was first diagnosed with Multiple Sclerosis I was working on a building site. I was a roof tiles. Often I would turn up to work and there would be a couple of tons of tiles on pallets on the floor all needing to be carried up onto the roof. Each tile has to be carried up ladders onto a scaffold, and then up onto the roof. All of the previous roof covering be it slates or tiles had to be carried back down. All the felt all the battens had to be carried up and unless it was a new building the old covering carried back down. No one knew I had multiple sclerosis they all thought I was a crazy roofer who often tripped or fell over for no reason. Even I didn't know I had it unroll one eventful day near on thirty years ago when I was subjected to a lumber puncture in Brook Hospital. It's been knocked down now and someone told me it's a giant Tesco. But in 1993 it was where I learned I had a disease that would go on to change both mine and my families lives.
I had known I had something wrong but being a typical man I tried to ignore it, but eventually I had to admit I was no longer superman and seek medical advise. I can remember giving back a medical certificate to my GP when he offered it. Saying I am self employed who will pay me if I'm sick I cannot lay down and rest for two weeks. Eventually the ms got so bad I couldn't walk without falling over. And I had a stick to aid me walking. I was no longer roofing a mate had to firemans lift me off a roof in Cliftonville. Still at least with a stick I had an outward sign I was not like 'normal' people. Not many 36 year olds need a walking stick! But I had no spots no deformities  to be an outward sign I was actually ill. Then I got worse and had to use crutches, I still fell over a lot but normally when I was indoors when I didn't need my crutches you are safe in your own home aren't you. No you're not but eventually it dawned on me I was no longer safe anywhere, if you can knock yourself out falling in the 'safety' of your own home you could be a danger to yourself anywhere, and not only myself. What if I fell over in the street and went under the wheels of a bus. I needed to go in a wheelchair! At last a real visible sign that I was ill. People could now see I had an illness. The often said " you're looking well" probably meaning you don't look ill get up and walk you malingering sponger. As I said in the title to this piece not every disability Is visible. I have a couple of mates who have heart problems, one cannot walk upstairs with stopping halfway. He is out of breath walking across the room. The other one is not quite as bad but his heart is going to give out at any even the slightest physical exertion. If you sat in a room with either of them you wouldn't know they were ill, let alone close to death walking down the hallway to pick up the post.

I read a post on Twitter this week about someone posting a note onto a ladies car saying she should be ashamed using a Blue Badge her she and her daughter could walk so well. That there were loads of people with proper disabilities . The day concerned had a severely disabled daughter who has both mental and physical problems. But because she seemed okay to the person who wrote the note who never knew anything about the poor child's many and complex needs. He was qualified to judge that she didn't need a Blue Badge and was swinging the lead. I know how hurtful other people can be. Not ever illness is visible and until you walk in someone's shoes please don't judge them.