The shortest month of the year seemed endless. Every day a roller coaster of spams, pain, fatigue and stress.

He wakes in pain so bad he can hardly talk. Muscle spasms so violent and strong it is beyond exhausting to even dress him. His range exercises take all of my strength. My body aches and I am without energy by noon. Early afternoons are best. He can communicate, do therapy, enjoy some music. By late afternoon the pain returns and he has what we call the pain nap. Again, he cannot focus or interact. He endures until he loses consciousness, finding some respite for an hour or so.

We altered his pain meds to toxic levels, then reduced them to less than during his hospital stay after no results. Two different meds have been tried. None have brought relief. Finally by mid month, his Neurologist gave him a referral to Stanford Pain clinic. We go tomorrow, the 3rd of March.

It took 2 hours to fill out the first questionnaire. We still have another when we arrive. I need to bring $800.00. I am trying to be optimistic. I want to believe there are medical facilities that really try to see the patient, think about the problem as unique and seek solutions accordingly. Past experiences creep in bringing doubt and pessimistic expectations. It is a long drive and a lot of money. And we are so tired of disappointments.

Aside from his pain, his chair has yet to be fixed. It does not hold a charge so needs new batteries. The repair requires a prescription from his doctor. After 2 phone calls yielded no results his physical therapist finally wrote one. Hopefully by early March.

His rehab doctor has been tough to get ahold of.  He had to cancel an appointment when the van would not start last month. We could only get the exchange for a week, even during office hours. We finally made one but got a note in the mail telling us to make and keep appointments. Go figure.

He managed a couple of good days through the month and was able to have some time with friends. It lifted his spirits, helped him feel more like a person less handicapped. I wish he had more days like that.

All month, every morning and evening I watch him in agony. The pain wakes him at night and he cannot sleep. He has no energy then, little appetite, seldom laughs or goofs around. I am merely an observer. There are no physical comforts that can help. We wait for it to pass. I watch him become lethargic, then appear as if he is inebriated. His eyes roll, his head falls until he passes out. The burden is crushing.

My body is slow and heavy. Everything from my computer to my lunch bag feel like loads I can barely manage. Going up the stairs at work takes tremendous effort and I wonder if one day I won’t make it. I am constantly on the verge of breaking. I tell myself that one more thing to deal with and I will not be able to handle it.

Then one more fucking thing always happens. Now I am a numb zombie waiting for the next shit storm, knowing it will come, expecting it at the worst possible time. But it comes at an even worse time than I can even imagine.

The end of the month brought the latest. The new cg, whom Colin really like. L took good care of him, she interacted well. She seemed so perfect. She has disappeared on us. Two work days now she did not show up. The first was a week day. She had missed her previous shift due to her daughter’s illness. We did not get her text until the morning. I could not get ahold of D, so had to call in at the last minute. The last text I got from her assured me she would be here for her next shift. Then nothing. Not in 4 days. No replies to texts of phone calls. We are now down to one cg, looking for another, again.

This means I am the second. No breaks until another is found. Nothing gets done around the house. Now I can look forward to more exhaustion.  By the end of each week I am so tired from not sleeping at night my thoughts feel muffled, like I cannot quite figure them out. My responses are slow, my temper short. Not even alcohol is helping so I am not interested as much. That is the best thing to come out of our current plight.

My time is so limited I seldom see my husband. He helps as much as he can in so many ways. But the effort feels like an umbrella to stop a tsunami. Nothing but time can stop the work, the worry, the sadness, the helplessness. Time is something I feel deprived of. There is time for Colin’s care, appointments, prescriptions, calls, paperwork and all the strain that accompanies them. There is no time for my husband, myself, my home, friends or fun. I have little to look forward to except the end of the day, those few hours of sleep and sweet oblivion.