Memorial Day weekend is my sickiversary. Eight years today.
Things are looking up, though – I think I’m doing better now than any point since the end of 2007. Among the indications of improvement:
- I’ve been playing Words With Friends for a couple months now. This requires more cognitive power than I had for a long time – between word-making and strategy, it would make my brain hurt and make me very tired very quickly. But now it seems to be easier, and it’s really enjoyable to have another way to interact with some of my friends.
- I’ve felt well enough to have short visits with friends who’ve come through town. Five separate people have stopped by in the last six months for anywhere from an hour to overnight, and while it’s always been a little wearing, I’ve dealt with it without a major downturn.
- I’m walking better. For a long time, my muscle wasting was such that I got around with a sort of tottery gate – it felt more like using stilts, swinging from one point to another than actually walking. But now my gait is edging more toward normal, and I find I can negotiate stepping up or down without having to grab onto something and control myself using my arms. I would also swear that my calf muscles are looking a bit more developed. Nowhere near normal, mind you, but not quite as skeletal as they are in the last pic in this entry.
- I seem to have more arm strength. This has been an issue since early on – I had already lost a lot of upper body strength before I was more than moderately ill. It’s easier for me to lift and maneuver objects lately. No Olympic records here, either – I’m talking about things like handling a watering can, or getting a large bowl out of a cupboard – but it’s enough that it makes a real difference in what I can do.
- I’m able to get up more times during the day, and I’m able to stay up for longer when I do get up. I still have to watch it, but I don’t find the blood settling into my legs in 30 seconds like it used to – instead, I find myself getting a little faint instead of feeling the characteristic pain in my legs that the blood settling there produces.
- A couple months ago, I started to make my own breakfast. This either involves measuring out muesli, sitting down to cut up dried fruit, and remaining sitting up while the whole thing gets nuked for a few minutes, then getting out the soymilk and pouring some in, or getting out a cutting board and knife, washing and chopping fresh fruit, pouring a bowl of cereal and putting some soymilk into a little pitcher and carrying everything out to my dayroom. Sometimes I realize I’ve forgotten my pills and I have to go back to the other end of the kitchen to fetch them. This might not sound like much to a healthy person, but for the last few years, it might as well have been a marathon.
- Likewise, I’ve started a fair number of recipes for Chimp. This involves 1. gathering ingredients, 2. gathering implements 3. chopping, mixing, etc. Sometimes I only get to 1. or 2. before I have to stop, but I have actually made cornbread all the way through once, and on separate occasions I’ve left him with biscuits, flatbread, or cookies to roll or portion out and bake. Just today, I helped him fine-tune a big batch of pesto from the parsley that overwintered in our garden.
- This spring, I’ve expanded my deck railing garden quite a bit, and I’ve been able to do more of its care. I’ve loosened and mixed dirt with a spade, filled pots, planted seeds, mixed up extremely stinky fish fertilizer (I know, I know, I’m a vegetarian; I plead that the smell of standard fertilizer is one of those things that made me feel sick even before I became ill. But as Chimp puts it, “I don’t think they harmed the fish; clearly by the smell of this stuff they just made them poop in a bottle”), watered (including managing lifting a watering can above my waist sometimes), and pinched things back. Last summer all I could do was go out and look at things, and do a bit of pinching.
- The big development garden-wise is that I’ve begun to be able to manage to get out to the raised beds and the bed along our deck out in the yard. It means I have to go down some small steps and walk about 20 feet total, I think. We have four raised beds – or I should say, we’re about to have six, because Chimp has built two more. Out there, I’ve watered, harvested lettuce, cut down the overwintered parsley that was starting to go to seed, and picked snap peas.
- The other big development is that I’ve finally seen all the upstairs rooms in person. I had made it up the stairs a few times previously – a couple of those times because Chimp had forgotten to turn off his alarm before he left the house – but up until recently, I hadn’t seen our guest room or the upstairs bathroom in the flesh. But now I have. It’s surprising how different they look than the pictures. Unfortunately now I want to redo the upstairs bathroom more than ever. By the time we get the budget together, 80s smoked glass and brass-toned shower doors will probably come back in. Sigh. There are parts of the basement I still haven’t seen, though, so I have the excitement of the laundry room to look forward to.
I don’t know what to attribute all of this to – is it the lingering effects of the short course of GcMAF, the continued Cheney Protocol, sustained good sleep, or just my body mysteriously turning things in the right direction? I can’t really say, but I’m grateful for every bit of it. I still spend about 98% of my time lying down, so I wouldn’t call myself “housebound” rather than “bedridden” yet, and I try not to ever assume that wherever I am, that I’m going to see sustained improvement from that point. But it is wonderful to have capabilities now that I haven’t had for a long time.
These are great tiny (big) ME improvements. I hope they are sustainable for you. Fingers crossed. That GcMAF, sounds horrible errr hopefully it was something else that helped.
I’ve had a tiny big improvement too, I’ve started editing photos from 3 years ago…first time in 2 years I’ve been able to do that. (the first year I had a life and hadn’t got around to it). Only 2 or 3 photos at a time but wooohooo it’s great to be able to enjoy something the other me used to enjoy. (I attribute my improvement to oxygen therapy, helping slightly with neurosensitivity stuff 🙂 )
Let’s keep going this way…
Ps you totally smashed me with the pea competition.
Sarah, that’s great! It really does make a difference to be able to grab a little bit of “life before” here and there. It’s good for the soul.
Congratulations! It’s great to hear of your improvements. Every step forward is a win.
I’ve felt worse. I cannot tolerate the heat, even more so than ever. I’ve been in my a/c bedroom, ventured out in the hallway and to the basement and to get my mail in the lobby, but fast back to the bedroom. On Monday I felt like my head was on fire; that was a first. Have to figure out life in the big city, with its heat, smog, cigarette smoke, auto exhaust, how I can get what I need — and do a few must-do errands. But it being so hot now, I fear July and August.
I’m just glad to hear you’ve improved. Hope you can stay cool in the hot weather.
And I’m very impressed with the fresh vegetable garden and that you are gathering up the produce and using it.
Sorry to hear it, Kathy. I can’t deal with the heat either, so I totally sympathize. I hope we will get a cool summer for all of our sakes. And I hope you’re sleeping better.
Oh, hooray! This is so lovely! I had wondered if things were looking up a couple days ago when it was clear you had been working in the garden yourself.
I think it’s snow pea magic. 🙂
They certainly were a good motivator to see if I could get out there. They’re very tasty too – I wish we’d planted twice as many.
This is such wonderful news!
I agree! I’m not up to Warrior Dash – will have to check out the basement first, but right after that.
That’s so great to hear! You should add “blogging impressively” to your list of activities
Much appreciated, cuz!
It makes me immensely happy to read this, Jocelyn. I hope you keep on moving in the direction of gaining back the life you so richly deserve. Fingers, toes, arms, legs, and every hair crossed for you… Hugs! Jennifer
Thanks, Jennifer! I hope so as well. I would like it for all of us, too.
Fabulous news! Your blog is inspiring so many. Big hugs to you!
It sounds like our new kitchen with ’80s’ country blue wallpaper, complete with little houses, on the ceiling needs to get together with your upstairs bath.
Oh, Erin, the stuff in this house. The woman who lived here before us said to Chimp that she hated to leave because she had finally gotten everything just the way she wanted it. I am not quite as fond of mauve as she. And I will send two floors worth of powder blue carpet to go along with your country blue wallpaper.
I am glad .
Thanks, Susie. I’m glad too.
Yaaay! Just don’t push yourself now. 🙂
No worries there; I’m lying around eating bonbons almost as much as ever!
It’s so good to hear your improvements and to know that you are noticing them. I agree with the commenter above – don’t push yourself – but keep noticing any improvements.
Thanks, Tamara! It does make it easier to be grateful these days.
Its great to hear about your improvements, long may they continue! Its so important for us to get a sense of achievement from the small steps that we make. In order to make them we’ve had to make an olympian efforts in terms of learning our daily limitations and sticking within them without loosing motivation, not an easy task!
Thanks, SFG! Yes, the little stuff is big and it has required a lot of self-discipline and not a small amount of adjusting my expectations.
I am so happy for you, you really deserved a brake. Hope it develops into sustained improvement.
The sower it goes uphill the better the end result.
Are you doing something new for your sleep or is it just improving by itself?
Thanks, Inge – Cheney has said the same thing to me – not to be discouraged with slow improvement because it tends to be the more lasting type. I’m doing the same things for sleep except I’ve upped the amount of mag chloride I’m taking because a new batch of mag spray I got didn’t seem to be as effective. Otherwise it’s the same pile.
This update brought tears of joy to my eyes. I love the thought of you getting to really enjoy your garden and even the simple joy of prepping food. Hoping for continued improvements and another chance to visit soon. Sending hugs!
Thanks, Karen! Glad it made you happy – it makes me happy, and I hope it holds.
Hooray to the joys of pulling lettuce, standing, lifting, stirring, chopping… And blessings to you and all who have ME/CFS.
From a steady reader and admirer of your writing – this is great news! I’m glad you’re able to do some gardening and cooking – each so gratifying in its own way. I’ve found I can do a half-hour or so a day alongside my perennial bed, sitting down on a pad in the grass and pinching off weeds at the ground line (I don’t have the arm strength to pull them or to hold an implement that would root them out). Lately I’ve enjoyed talking to my iris bed (“You’re doing great, guys! You’re so beautiful!”) in their most spectacular spring ever. Goofy, I know, but the pleasure of being out in the air and sunshine can make a person a little giddy 🙂
Thanks, Carola! Glad to hear that you are finding a way to do some of the same.
It’s been a while since I stopped by your blog, but was really happy to read about your improvements. I hope they continue.
I love your peas – they look delicious! I’m utterly delighted that you call your guy Chimp, too. That’s way funny. Visiting from the Idiosyncratic Eye.
Thanks for coming by, jesterqueen! Chimp is a short form of his longtime internet handle, so it just seemed natural to use it here.
i think maybe you need tiny tiny doses of gcmaf rather than large and frequent doses like cheney gives. they also have a number of yogurt MAF concoctions now….
i know a number of people improving on GcMAF but they are taking ultra low doses, once a week, and taking more time off if inflammation flares.
so glad you are feeling better!
Linda, I’ve heard of a few people doing that, and if I ever am able to go back to it, that’s definitely my plan. Thanks!
Could you please mention the type of magnesium you take, which helps with sleeping? I think you wrote about a spray. Does it still help you? I’m at my wits’ end with the sleeping. In the last few days, I’ve fallen asleep, only to wake up two hours later, and then not be able to sleep again.
I bought magnesium pills, but when I opened up the bottle, the smell made me nauseous. It’s probably ingredients in the filler, but I have to try one.
Thanks, and so great that you’re improving. Your Facebook page has had such good humor lately.
Kathy, I take 1.5 tablets of Alta brand Magnesium Chloride before bed and then another 1.5 with my second half pills that I take after 3 a.m. I also use Vinco Ionic Magnesium spray whenever I wake up. It’s expensive, so you might see if other forms would work better for you. Cheney recommends Magnesium Sulfate, but it disagrees with me – tachycardia. Hope you find something that works for you, prescription or supplement.
Thank you. Does the Vinco Ionic Magnesium spray work solely for you at 3 a.m. Or do you take other things at that point?
I’ve been falling asleep (with medications) and waking up after 2 (or 1 or 1-1/2 hours of sleep.. This has been since I stopped taking one medication. When I wake up after a short period of sleep, my body is ready for action. It’s like someone played Reveille on a trumpet in my ears. Going back to sleep is tough, as you know.
I spray magnesium every time I wake up, but halfway through the night, I take other stuff too – the list is pretty similar to what I mention in this early entry about my protocol. I can’t make it through the night with only one fusillade of pills.
Last night was the first night in a year that I slept for six hours straight through, but I had a wisdom tooth extracted yesterday, with novacaine, etc. Maybe this is how to get deep sleep!
I just noticed the name Cheney in your post and was wondering if you have done his stem cell treatment. I have been trying to find patients who have tried it but so far I haven’t been able to find many and it’s hard to get much info on it anyway. (I know a person in Australia who has recently done it and she feels a lot better)
Hi Amulya! Thanks for dropping by. I have not done Cheney’s stem cell treatment. One of the things about Cheney is that he jumps from idea to idea over time, which means that the treatments he recommends are always gradually but constantly changing. When I became his patient in 2009, he was actively taking people for stem cell treatments, but there is very little, possibly none of that going on now. I do know that people who did it generally showed an improvement for a while and then drifted somewhat back to baseline. It needed to be redone once or twice a year for maximum benefit. I don’t know any Cheney patients who’ve done stem cells who are writing a blog, so I’m sorry to say I don’t have anyone in particular to point you toward.
I was reading on Phoenix Rising about it but it were all old posts. I tried to find more info on the results but it seems impossible to find records of what the results were. I got interested because someone who is a patient of the same doctor I go to had it done here in Australia and she is doing quite well. It has only been done for 3 CFS patients here so far, but they all are quite happy From what I heard. But yes it needs to be looked at in the long run. I’m seeing my specialist soon and I will ask him about it.
It sounds like Dr Cheney is a bit the same like mine, he changes ideas and treatments around too. Some of the treatments are the same as Dr Cheney does and some are different. I have been going to him for nearly a year. So far B12 injections are the thing that brings some improvement and a special diet for IBS. But there is a still a long road to go as there are still things to try out and tests to be done. But each bit helps 🙂
Oops, this post gave me another username, but I am Amulya