the honest truth of who and where we are

It’s been a while since my last heart felt blog. As much as a had so much to write, I couldn’t remember how to sign in. It’s very easy by the way but my ms tricked me into thinking it was going to be hard so don’t do it and stress yourself out. I get very confused with technology these days..... one of my once great abilities now uses the brain that doesn’t want to acknowledge info or thinking. It’s been a very interesting few months... a lot or too much craziness. Not much happiness or overcoming issues like I normally do.

I hesitated to write this, as pain, from the definition of it to the management of it, is idiosyncratic. Rather than draw hard and fast lines, I prefer to draw attention to chronic pain and offer my own personal experiences. I will revisit this topic periodically. Pain, specifically chronic pain, is at best disruptive and at worst all-encompassing. MS-related pain varies in both location and intensity, and its omnipresence profoundly affects us physically and psychologically. If we are to sojourn alongside chronic MS-related pain, it certainly demands not only our attention but also proper management. I live each moment with pain — from the time I wake until I eventually find sleep, I hurt. I say this not to invoke pity but to give you a glimpse into my world. I have worked incredibly hard at learning to co-exist with constant pain, and that learning is a continuum. Pain management literally has been a lifesaver, as I would never have learned the accountability necessary to util

Fuck, Fuck, Fuck, Fuck, FUUUUCK......... Awake at 3 am .......... standing looking up at the stars and asking for guidance. “DAD”, what would you do ???? “MUM”, What would you say to them. I actually almost hear their answers and debate. Well dad, it’s like this.... the type of demyelination I have is genetic. It’s in our genes and I’m hoping like hell my kids and grandchildren are not effected or technology will save them. Mums answer was “ what a load of shit. What would they bloody know? Go into denial...” Dad Just goes along with it all but I can tell he’s thinking.... My visit to the Neurologist today was a bit surreal.  It was a whack of doctors gently actually telling me. Not sending me off and still having questions. Ultimately, this is what we’ve been waiting for, all the tests and barraged appointments came together in this two hour visit. I’m actually numb. I’m actually starting to have spacticity seizure. Be right baaaack.... I’m back. Off the above writing

it’s happened, I’ve lost my legs. I’ve had one or two warning signs leading up, but only lasted a day or most of a day. Sunday the 8th of October was d day. I remember doing my usual thing, waking at 1 am ( used to average 2am) for the toilet and my normal time of stiffness. I usually stay awake for two hours roughly.  just gently rocking or pacing like a robot!!!! TRUE. This particular Sunday morning as I gently went to stand, there was no stiffness, rigidity or spasticity in my legs. There was nothing.  I woke feeling strange as i had  a tightness around my neck and throat. Hoping once I got up and moved a bit, it would all regain its normalcy. Nope 👎 I went to stand but my legs buckled. The spasticity in my throat was fairly mild and I’ve had this many times. Like I said, once I move around it loosens up to a manageable level. From the ground, I tried pulling myself up, obviously using all my muscles and power in the upper extremities of my body.  My arms are built like a br

I’ve got this bitter taste at the moment. Not literally though.  People have again left a bad taste in my mouth. I really don’t want to feel like this. I love it when I meet beautiful people that you can sit down with and have a happy life experience discussion. The end

 http://smarturl.it/RobThomasPieces Also " diamonds" These songs resemble his wife's chronic illness that went undiagnosed for years. Possible ms, lupus etc. In 2015 she was diagnosed with lymes disease and other serious conditions from not having it treated.   My respect and thoughts for Rob and his suffering wife.....