Everyone has been telling me that I'm making progress. Physo patients who I don't know have even stopped to chat and told me how they've seen me improve. Then why don't I feel it???
Things will never be the same but I don't see any 'light at the end of the tunnel' where I feel that some degree of normalcy and joy of living returns. Eighteen months ago I was catheterized and hauled in and out of my chair with a hoist and now I move about from bed to chair to washroom under my own power.
So why was I more optimistic about the future when I first started the journey to recovery than now?
Constant pain varying from moderate to intense is continuous - relief comes only when passing out asleep.
- Nerve Pain continues - from just below the knees to the toes. A pain which is a cross between intense burning or an intense tingling (needles & pins). No relief from any medication (Nortriptyline & Gabapentin). So intense at time than it is difficult to concentrate on any task as my mind is constantly being drawn back to the pain.
- Sciatic Nerve Pain - Muscle imbalance has left one side of my abdominal/pelvic/back muscles weaker than the other side causing one side (hip) to be pulled out of alignment resulting in intense sciatic nerve pain. Doctor could offer nothing for relief & a year of physiotherapy has not helped this condition.
Spasms: an involuntary rhythmic contraction and release of the muscles, particularly the legs but extends into the back. Spasms have lessened in severity & duration over time but still can start up on either leg and be extremely annoying. Muscle contraction can be mild to extremely violent. A condition I shall have to live with.
Mobility: Continue to improve. It seems to me that 50% of my mobility problem was a direct cause of the spinal cord abscess and the other 50% was caused by muscle/ligament etc. deterioration from a half year+ lying in bed. Even now, some two years later, the amount of walking I can do is for the most part dictated by the time I spend in the physiotherapy department. After warm up and putting the braces on, there is only about a half hour of actual walking time available. A half hour once or twice a week is insufficient for recovery!!!
In the last few months walking has become more fluid and I'm able to stand more upright although the tight muscles/ligaments in the lower back refuse to loosen up and can cause a rather intense dull pain after standing erect for some time. The muscle weakness that is causing my sciatic nerve hip pain also shows up as I sway and collapse more to my left side with each step I take. I am starting to take the large and bulky leg braces home with me to add some additional time walking, however, neither our home's interior nor backyard etc. offer much room for a proper effort.
I have had one AFO (Ankle Foot Orthotic) made which I'm starting to use as my knee gets stronger and no longer buckles or hyper-extends as I put weight on it unsupported. It's my hope that in the somewhat near future I can get an AFO for the other leg and that I'll be able to replace my bulky KAFO (Knee Ankle Foot Orthotic) with the AFOs and have a more normal walking gait.
I am riddled with frustrations and overwhelmed with anxiety. Have to get back to work in order to continue my extended health care benefits including the drug plan and physiotherapy, yet the constant pain and discomfort make it difficult to concentrate.