Why I bother typing, I don’t know.
What should I do today?
Who should I see?
Where can I go to?
When will this PPMS give me another broken bone?
Should I break out the spray cans & do some stencilling?
Do I power up the synthesisers & make sounds?
Perhaps make a sculpture of a nude creature.
Maybe cook something different for dinner, then jump in my car & visit a museum to see some history.
Whatever I do. I can’t seem to escape the evolution of this problem & the people it attracts. Doh!
Wow! Well you could borrow my power chair & have fun on the pavements speeding along at 4mph whilst avoiding the illegally parked cars on pavements from inconsiderate drivers collecting their over 14 year olds from the nearest point that they can park to the High School Gates. Thus forcing you to play dodgems … it’s hilarious.
Or, how about relying on public transport bus drivers who are ill-trained in using the bus ramp for you to ride on/off. Better still, catch the Patient Transport ambulance to arrive at regular hospital appointments on time (be ready 2 hrs before the appointment) and then wait up to 90 mins to be taken home after the appointment. It usually means you’re out of the house at least 5 hrs for a 20 minute appointment.
Start a conversation with total strangers in queues, bus stops, waiting rooms and attempt several accents to several people.
Whatever you decide to do Puddle, do it with a smile and count how many people smile back. I’ve found smiling to be very contagious. Good luck x
I’ll just carry on driving the car I brought. 70mph on the motorway to far off places is more preferred.
Now I have a blue badge, to park legally in disabled spots.
Keep avoiding the offered medications, for a problem with no cure.
Weetabix in a bowl, seems a far better option, than taking a bowl of medication. Exercising is better than sitting in a chair for me, I’m sure. I was rail roaded into a wheelchair & didn’t like its problems on top of the health issues. It screamed common sense. Too many cooks, spoil the broth.
Talking to myself, gets more sense than listening to an expert. I’m the one with the Primary Progressive Multiple Sclerosis & know what it’s doing to my body. I’ll keep learning how to find a cure, using my book called Gray’s Anatomy. Maybe I can become a GP with all I’m learning. Or an MP, with all the problems I see going on.
Have fun folks. Luck is for gamblers. I know what to do & that is. Carry on regardless.
Terry
Terry and Chrissie, so much good advice.
I like to be active in many ways and try to avoid too much medication.
It’s an interesting point. I know some swear by their meds and It’s good on them but this is such a personal disorder.
Maybe I’ll get the paints out again or play about with a tune or two.
Best wishes.
It’s a great idea Steve. Have a healthy lunch too & try & get your problems motivated.
We are all different. My son is allergic to nuts & they are what I love.
Some people hate sprouts & I can eat a field of them. Best to steer clear of me for days after though. Poo wee!
I personally don’t like medication, since being pearlized by Baclofen for a few years. The anti depressants make me depressed.
I was told I would never drive again & I didn’t listen. Off to the shops in my car now. Even after having all my funds stolen & the PiP taken away. I should of never visited the GP in the first place. Falling over, braking bones, constantly being dizzy & peeing myself. Was far better than being taken advantage of by every scum bag around me. I’ve even been offered my job back.
Jamming away on my synthesizers, drum machines & being creative is key to keeping sanity. Listen to the idiots & it’s game over. Some folks don’t have a clue. Jealous of anyone with common sense. They just blame everyone for their problems & take what others are working on, because they are too dumb to think for themselves & prey on people with health problems. I want them to ask me for help. The phrase on your bike, springs to mind. A donkey has more chance of winning the grand national.
Terry’s story.
Brilliant that you got your car back Terry. My world narrowed right down since losing my licence. These day I try to get out and about on public transport. Most people I meet are nice. I’m a bit sad because one of my carers is leaving it’s so hard building up trust again with someone new. Michelle and Frazer xx
If you need advice on how to get your licence back, I have the contacts now. Typical how the mobility was taken away once I got my licence back. After buying my own car. I’ve since been awarded enhanced on both parts with PiP yet again. I’m starting to have the yo yo effect. It’s all them gangster rappers at work, hacking peoples details.
Message me any time Michelle. I was told I would never drive again, told I’ll be in a wheelchair from now on & almost killed by the medication. After years of being told one diagnosis to the next for years. I’ve stopped listening & stopped taking so called experts advice. Zero medication from here on. It allows people to say you’re crazy, when they have all your details. It increases the paper trail of loo role.
I wish I knew who to blame, but the cowards cover each others backs. Listen to what your body tells you.
Trust your instincts.
Terry
Are you sitting comfortably? Large hitting keyboard moment coming up!
Our body gives great and honest feedback with no outside influences. My diagnosis of MS was November 2011 but no type given. I was told it is a legal requirement to notify DVLA & my car insurers. I did this and my insurers were great. DVLA only used Medical Evidence (MRI’s and consultants evidence) and 3 months after diagnosis (Jan 2012) they revoked my licence. I couldn’t believe it, so I saw my GP & MS Nurse. Both of them wrote to DVLA to support my ability to drive. I still have their copies, plus the reply from DVLA to each of them.
DVLA literally wrote to my gp & MS Nurse with these exact words - "your professional opinion is valued but cannot be considered actual evidence. If you supply evidence that your patient was misdiagnosed or has made a full recovery from Multiple Sclerosis, DVLA will then, and only then, be prepared to review this case. …Your opinion is exactly that, an opinion only. Albeit professional, we are sorry to advise that opinions cannot and will not be considered. Hence our decision to revoke the driving licence of the above named individual.
So that was that, my fab convertible car was sold when it was only 4 months old. I lost out but someone had a bargain! Late last year (2016) PPMS was confirmed by my Neuro Consultant. Now I have no option but to accept it. Well, I suppose there is an alternative but it’s not much use to my loved ones.
So I privately bought…a Super Kingsize Electric Adjustable Bed (twin mattress so hubby doesn’t have to sit up or raise legs when I do), 2 Rise & Recline Armchairs (1 in Conservatory & 1 in Lounge), a Boot Scooter to fold into the boot when a driver takes me out, an electric Power Chair, it’s great, travels at 4mph and is my freedom to travel the world should I choose The nerve damage in my spine and brain has caused many problems. I no longer stand up for more than a few minutes (but better than not at all), I can walk a couple of yards (better than not at all), I have partial vision (better than none at all) and my thought processes are very slow (but I can still think). I now agree the DVLA decision was actually correct and had I still been driving, I would have been a danger to others as well as myself.
Food: I’m lucky my hubby is a retired qualified chef and knows all about absorbing nutrients. He makes fab fresh meals and then mashes mine with a fork to a smooth baby food type consistency. This lets me swallow without choking and digest without blockages. Fresh fruit, fresh veg, Vits B, C, D, Calcium, Magnesium L-Threonate, Omega 3 Fish Oil, Acidophilus Extra 4, Daily anti biotic to deter uti’s, daily Aspirin 75 to deter more mini-strokes. I take narcotic controlled drugs for neuro-pain and apart from that, I’m hunky dory. Life is full of ups and downs so I let common sense prevail. My body does the talking, my chair gets me to places by bus, taxi’s, trains, boats & planes. Sure, it takes me over 5 hours to go to the large town & return - I live in beautiful countryside with a rural bus than runs every 1 or 2 hours or none on Sundays. Yet I still count my blessings and see the good in this Wonderful World.
Chrissie x
Good on you Chrissie, shame about the driving verdict.
I was working in Dec 2013 & kept falling over. My GP told me I had worms firstly & vertigo the next visit. I couldn’t understand why I kept falling. With the failure of my GP, I demanded a hospital referral. One week later I was diagnosed with PPMS. Lost my job, van, car & took medication that almost paralized me. The DVLA had to be informed of my diagnosis & that ended my driving.
After 3 years of none driving, I kept pushing as to why the DVLA were with holding me from driving. I was assessed by their medical department after a few refresher lessons. Driving licence returned 2 weeks later. From taking no more medication, I started exercising & can walk short distances. Even after being told my life would be spent in a wheelchair.
If the people who dish out diagnosis think a person is just going to bow down & accept a PPMS diagnosis out the blue & give up their entire life & sit in a wheelchair, it’s not happening. Not with me. Someone needs to go to medical school & it’s not me.
Referring me to a neuro psychologist & claiming because of the PPMS & my attempted suicide, it must be the disease, is a bit lame of an excuse. If I’m expected to give up my life so easily. Perhaps someone needs a medical negligence suite. Taxis, trains, buses & airplanes. Yes, there are other modes of transport. I’ll enjoy driving some more. See what my next diagnosis turns out to be.
Keep counting your blessings Chrissie. It is a wonderful world & not all of it is countryside. A lot is urban & filled with strange folks who pretend they know it all. Keep eating healthy & I wish the best for you & your situation. I’ll keep doing things my way, because we are all different. Thank goodness.
Terry
Flippin’ 'eck Terry, you’de got some gp if he diagnosed worms because you fall over! It would be a comedy if it wasn’t so serious. Keep smiling & enjoy your newly returned driving skills x
Zactly Chrissie! Taking medication that destroys the immune system & the bodies natural defences, wasn’t what the PPMS needed in the first place. I’m so anti medication now, it borders on holistic & talking to Gaia in spirit.
I also discovered all about medicine interactions. Baclofen & Ibuprofen combined. Make an almost suicidal dose of medication. I’ve learned a lot about MS & how the nerves protective layer, defends the brain & spines electrical signals. From being an active outdoors person, to being a paranoid cabbage. Slobbering on a sofa & sleeping in excrement.
That’s when my savings started to be stolen & the slimey hackers started steeling anything of value via the internet. My sanity went bye bye. A testament to the human spirit, is when I decided no more bull shite. I count my chickens now. I see people taking a cereal bowl of medications & stay out of their choice.
The positive side is, I’ve found a very inventive avenue. It’s a lonely place, but one where I see the light & how to escape this MS. I trust what my body tells me now.
Cheese oatcakes, with mushrooms & tomatoes for lunch & a trip out for the afternoon, is what this doctor tells me.
T