Yesterday was my trip to Cambridge for my IV. Normally this trip takes about 45mins by car on some heavily traveled roads. Hence, someone has to drive me. It is usually my son and on rare occasion my husband. Well, the two of them now have regular day jobs so they aren't available for taxi service anymore.
No problem says I, I've been using the MBTA Ride service I'll just call them and book the trip. Due to territory issues (they have multiple agencies handling different geographic areas) this would mean two van rides each way. They would drive me to the Oak Grove T station and transfer me to a van to take me to Cambridge. Now riding in these vans has rattled me before but I was hoping that all of my improvements would allow me to make this trip with little problem. I seem to be tolerating the car trips with nothing but some minor motion sickness after the IV. Luckily my Mom was visiting this week so I decided what the heck I'll try this and see what happens. So Mom and I and my transport chair left for Cambridge an hour and a half before my appointment.
Now, this illness has multiple layers to it. The glutathione seems to have detoxed my system. The diet seems to be working its healing magic. I have gained ground in mental capabilities. I have better concentration, comprehension, tracking, communication and fine and gross motor skills. I am reading again and driving a little bit. I still find that I tire easily with physical or mental activity. Reading can make me just as tired as walking the yard.
However, yesterday I was reminded that CFS is first and foremost a neurologic illness. I did little activity. I sat on the bus. Chatted with my Mom. The bus ride was noisy and bumpy as public transportation is wont to be. I knew I was in trouble by the time we arrived at the clinic. I was already fatigued badly. I could barely get down the steps of the bus. My Mom had my wheelchair at the ready and I collapsed into it. I hadn't even had my IV yet.
I have the shakes and balance problems by the time we got to the IV room on the third floor of the clinic and I had to use the counters to transfer myself from my chair to a treatment chair closest to me. The IV went well. I relaxed, closed my eyes and opened them again only to find that the IV had run out. Mom told me that a half hour had passed in what I perceived as a literal blink of my eye.
Since the van had dropped us off early, we now had an hour wait for the van to take us home. Mum went next door for coffee and my rare treat of a Boston Cream doughnut. We sat in the lobby watching the cars zip down Mass Avenue while sipping coffee. We chatted. We waited. People came and went and asked us if we needed to call someone to pick us up. At the appointed time, we went outside to wait. Other handicapped vans came and went. Taxis showed up looking for their fairs. A half hour passed and now I'm freezing cold as well as exhausted. I called the Ride dispatcher and was told the driver was running late and would be there soon. I probably got the guy in trouble but I was worried about the connecting van.
Now the fun began. I couldn't even walk unassisted at this point never mind climb stairs. I made the decision to stay in my wheelchair and use the van lift. Once inside he strapped my chair to the floor, strapped me to my chair and then put a seat-belt on me. I felt like a mummy all tied up. But I felt secure and I managed to relax during the ride even though it was loud and bumpy. Of course there was another passenger on the van who needed to be dropped off before we could return to Oak Grove. We were now in the midst of evening rush hours so the traffic was horrendous. While we were still in Medford a call came in from the dispatcher asking his ETA to Oak Grove because the van was waiting for me. We still had to traverse Malden.
We get to Oak Grove and the next driver was really nice. By now my neuro symptoms are settling in. I'm sleepy, having trouble coordinating movements, and speech is getting harder. She gets me onto the new van and there is some poor little old lady on the van. God knows how long she has been stuck here waiting, probably at least a half hour if not more. I felt so bad for her. The driver strapped me down but my chair wasn't as secure this time. I know enough about load straps to know that I was safe and the straps wouldn't loosen up. Thank god because I was popping wheelies on the ride home, up on my back wheels, up on my right wheels and then back on the floor again. The roads around here are atrocious. They are full of potholes and many of them need resurfacing. One hole we hit was so bad I actually bounced up out of my chair. Yes, despite all the straps my butt was no longer in contact with my chair seat for a split second or two. After I came back down I was immediately on two wheels leaning severely to the right. Holy crap!
I did make it home in one piece. I could no longer talk. We used the lift to get me out of the van and the chair to get me to the steps of the house. I could only walk very slowly hanging on to my husband for dear life dragging my feet the entire way up the steps. I went straight to bed. I was freezing. My insides were tumbling clockwise. I felt like I had been rolling downhill for the last two hours. While I was now resting at the bottom of the hill, my insides hadn't gotten the memo that I had stopped rolling. It is such an odd sensation. Also, my skin was tingling like a small electric charge was running over the entire surface. I just wanted dark and quiet and time for my body to come to rest.
I'm still paying for the trip today. I'm tiring easily. I can't do much. I'm having trouble comprehending what I read. I can't multitask even simple things. My muscles ache as if I had been hiking all day yesterday rather than sitting for five hours straight.
This illness HAS to be neurological. I did NOTHING physical yesterday. I sat in a chair or bus seat for five hours. I didn't even do anything mentally taxing. No reading. No problem solving. No computer time. A little bit of talking but nothing excessive. I spent most of the afternoon waiting. No what did me in was the over stimulation. Getting bounced around. Loud bus noise. Being jostled. Even when I could relax my muscles on the trip home it wore me out. How very very strange this illness is. Glutathione won't be THE answer. It will help with the symptoms but without a cure my body has to cure itself. All I can do is give it the building blocks it needs to make healthy cells and that I can only do through diet. This is going to be long slow road but I have hope.