Hi,
I will address your long post in sections (if you will permit me) because there are several points to address. Many of us have, or are, going through the same things as you, so we feel for you SO strongly, in fact your experiences are so much like my own, it could have been me writing the post. It’s like going down a helter skelter water shoot, once you’re launched there’s no going back and you can’t stop yourself, you have no control, you think things couldn’t get any worse and then they do, you just have to endure the atrocities and pray you survive to the end.
I too have felt as if my ‘time’ is nearly up on several occasions, in fact 8 years ago, I celebrated my 50th birthday in February because I didn’t think I’d still be here in the June!! Other than that I have left notes for my children on more than one occasion because I didn’t think I’d make it through the night.
Then there’s the other side of the coin when, like you, you contemplate whether or not it would be a blessing if you didn’t wake up – because the pain was SOOo bad!
The trouble with our energy supply is that we have ‘no reserve’ so you have to prioritise and cut back very strictly on anything that’s not ‘absolutely necessary’ – you have no option but to become ‘self-centred’ in the literal sense of the term. If not, because we have no energy reserve, we have to create energy in a different chemical way, which produces lactic acid as a by-product and this is what gathers in our muscles and causes pain, just like a Marathon runner does when he ‘hits the wall’.
In my experience, you will speed up your decline and certainly increase your pain, if you do not moderate your activities.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.