I wake up and get straight out of bed without spending two hours “gathering my strength”. I lift my shower chair into position, lower the shower head and wash, condition and rinse my hair. This is something I manage to do about once a week on a day with no other obligations, but today I got a last minute appointment with my nutritionist. I don’t rest after my shower as I normally do- I towel off, pull on my compression stockings, put on jeans, boots and a sweater. I wash my face, brush my teeth and sit on the toilet to dry my hair, resting my elbows on my knees and hanging my head low. My husband usually helps me with this, but he is at work. I clip on my pedometer, strap on my heart rate monitor, drink a glass of salt water and make tea in a to-go cup. I move deliberately, like a sloth, conserving energy in every moment. I lock the back door, make sure I have my blood sugar tester and glucose tablets, scoop up my binder of test results and go out the front door, pulling it and locking it behind me, while juggling the folder, my bag and tea. I make a point not to say goodbye to my dogs, which I normally do. I am tallying every exertion — stiff door, weighty purse — since I don’t have my husband’s help and don’t want to needlessly lean, reach or speak.
I walk slowly to my car, get carefully in and raise the seat at a snail’s pace with the manual pump handle that always cranks up my pulse. And I drive to the clinic — the first time I have driven in about 6 months. I breathe rhythmically, hold the steering wheel lightly, casually turn the corners as if this is no big deal.
I remember myself as I used to be, hopping in and out of my car all the time, driving with confidence and speed all over the city. Multitasking, running errands, getting things done without a thought. Being housebound does strange things to your brain. The first thing I thought when I got into my car was, Will I be living in here one day? Could we trade it for something bigger? I turn off the radio so no extra energy goes to processing auditory signals than is absolutely necessary. The world going by is foreign and in stark relief. I notice everything; things that meant nothing now mean something. That fence is beautiful. Those people can afford a boat. I used to run with Bowie down that path. That person is strong enough to lift their kid. Their smiles are radiant.
I drive past the cemetery and first wonder if that’s where I’ll be buried and then see the cherry blossoms and want to pull over to drink them in a little longer. I drive past the hospital and make a mental note about how long it took to get there and feel confident that I could drive myself, if needed. I look at the people in the cars beside me and can’t believe that they are probably not thinking about how miraculous it is to have freedom and independence. Everything seems to represent our precarious position in this glorious life: nothing is important, but, also, nothing can be taken for granted.
I get to the clinic early so I can wait for the closest disabled parking spot to vacate. The last spot, six cars down, is open but I can’t fathom walking that far. I think about my rushed morning, my shower, the drive… I think about my appointment, the drive home, having to get undressed… six car lengths is a million miles. I wait for the first one to open up.
There are five stairs up to the clinic and I have to go through two sets of doors. Neither of them automatically open with a disabled button. They’re heavy doors. I hold the first one open for a man with a cane, he zooms by me quicker than I could ever move. Inside, I put all my things down on a chair before checking in at the reception desk — standing while holding that weight is not an option. My nutritionist’s office is in the furthest northwest corner of the building; we stroll slowly, she asks me if she can carry anything and I answer, “it would be more energy for me to raise my arm and hand you my purse or binder than to just keep them down at my side.”
We talk for over an hour. At one stage, I get very dizzy and my vision blurs out, I think I’ll have to abort our meeting, lie on her floor, call my husband … but adrenalin kicks in and I push through it. The shuffle back to the exit doesn’t feel as long — I’m not winded from stairs this time. As I walk by the front desk, the receptionist asks if I need to make another appointment and I wish she hadn’t noticed me so I don’t have to speak again. I stop and say, “I’ll call from home so I can look at my…” I can’t find the word for calendar. As I stand there, scouring my mind, an elderly woman with a 3-wheeled walking frame motors by me and flings open the door, thrusting out a hip to keep it open while she exits. I get distracted thinking about how I would give anything to trade this illness for another. Hobble me, but give me the ability to throw open a door. I want to barter my body: I’ll give you an arm if you’ll give me energy. I’ll give an arm, both legs and my hearing, in return I just want my body to be able to recharge. Take half my remaining years away, just give me ATP while I’m still here.
I give up trying to find the word for calendar, shrug, smile and leave. Back in my car, I leave the disabled spot and pull around the bend and park. I recline my seat all the way back and do a mini-meditation, tell myself that the world is not spinning, my throat is not sore, my ears aren’t ringing, my head doesn’t hurt, and I can do this. I breathe and talk to my cells, encouraging them to rebuild, refuel, recover. When I get home, I’ll have to find the energy to cook myself food before I get into bed. We have some frozen broth and frozen turkey, it’ll be easy. I’ll need to write down everything that my nutritionist said so I don’t forget; I want to share it with my low-histamine Facebook group. I envision exactly what I’ll do, watch myself standing in the kitchen with a low heart rate, eyes focused and clear head. You are strong, you won’t suffer for this day. The universe will carry you through and there won’t be retribution. You deserve a victory.
I sit up, push in the tough clutch and drive home.
“If a dog will not come to you after having looked you in the face, you should go home and examine your conscience. ” — Woodrow Wilson.
Brilliant description of a brief trip out that healthy people would do without thinking. Brings back memories for me but also reminds me how much I already often take for granted being mobile again – it’s still a struggle and I still get payback, but nowhere near as bad as it used to be and still is for you. Hope the trip was worth the effort and you had a useful appointment. Jak x
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You don’t take anything for granted, I can tell. And you give me such hope for the future. Thank you for understanding. X
Another brilliant post, all be it for the wrong reasons. I know there is no point asking just how much you suffered as a result but I hope the following days were slightly better. xx
Thank you so much, Marie! I’m suffering in that my body won’t rest. Couldn’t meditate, couldn’t sleep, can’t stop reading. Praying payback doesn’t come in the next few days. X
O no, I know exactly what you are talking about, the overdrive hamster wheel. I hope it slowly winds down instead of crashes. xx
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It sounds like it was brutally hard, but it makes tears come to my eyes that you DROVE!! It gives me hope that one day, just maybe, I’ll be able to drive again. Even if it’s just for a few minutes 🙂
Christine, I DROVE! I knew you’d understand how exciting that was. And it wasn’t hard- the worst was imagining the what ifs (what if I get in an accident, I won’t have the energy to manage etc.). It would be impossible on a hot day or during a busy time of day… baby steps still. X
It is seriously major. I tried it out about six months ago and….it didn’t go well 😦
Isn’t it amazing the things we took for granted before?
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Go you! Strong like Amazon!!
I hope you don’t get too much payback.
Thinking about your meditation to restore your cells – have I mentioned about fasting diets? I’ve found fasting has really improved my symptoms, it is interesting to read about at least.
Ha! A 5 foot nothing, brunette Amazon! But maybe my fight is Amazonian… I’ve wanted to give up so often when I’m really sick… If the illness is somewhat manageable, I’ll be able to continue the fight.
Fasting is out of the question for me- I’ve already lost too much weight and I’m eating constantly, but I’m happy it can help you!
Hello! I have just come to your blog, as I see you are following mine. I’m guessing you found it in the comments for Bertie and Me. I’m so glad! It sounds like we have a lot in common. Not only are we geographically close, but we’re the same age, and we both got sick in November 2011. For me, it was november 21st.
It was so good to read your blog today. It seems that I have fewer food choices than you, but more energy. My energy is very directly related to how much pain medication I allow myself to have in a day. If I just threw caution to the wind I could do SO much, but then I’d blow through three days worth of pain meds in one day- so that’s a big no-no for me. I need a shower today, but I just couldn’t- we returned from a mini-vacation yesterday, and I just don’t have it in me. It’s so good to know that there are others who understand. To think that showering was something that didn’t require planning. Hmm, perspective really does change, doesn’t it?
You mentioned some mast cell groups on Facebook. Could you give e their names? I’m really trying to find people like me who are down to no food. I have some real challenges, and I’d live to get some other’s perspectives.
On a completely different topic- I used to have migraines very predictably once a month (I literally wouldn’t book meetings for those two days), then in 2001, when I had reactive arthritis, I had IGG blood allergy tests done by a naturopath, discovered that there were certain foods that I could eat in small amounts at most times, but not for the 5 days before my period- or it was 36 hours of hell for me. Haven’t had a migraine since. Well, okay, one, but I had ice cream the day I got my period- my own fault on that one!!! Have you had IGG as well as IGE tests done? Might be something to consider.
Thank you for the comment! I haven’t actually been able to read your blog yet because I forgot the password. 🙂
I didn’t know we were geographically close and got sick the same month! Wow.
On Facebook, I joined: Mastocytosis and Mast Cell Disorders- Integrative Approach and MCAD and Related Disorders. I started a group called Low-Histamine+ Autoimmune Paleo (AIP) Help because that is the diet I’ve been tackling this year. Hope I see you there!