Tag Archives: symptoms

by

Spoke too soon. Again.

This is such a sick joke. I actually thought the last few days, maybe this is the beginning of the end. I think I’m going to get better now… What’s wrong with me? Am I going to spend the next 20 years thinking this is over every time I have a day when I’m able to move? I’m so angry about the tease. I’m so angry about the Catch-22: I can’t move without hurting myself and, if I don’t move, I’m hurting myself.

I had a horrible night’s sleep. Didn’t fall asleep until nearly 2am, had nightmares, awoke constantly, had drenching sweats. Today I feel like a truck hit me. All of my muscles feel inflamed. I’m hunched, I’m hobbling, I’m creaking, I’m wheezing. My spine is rebar, my eyes are embers, my head is a rotten apple.

But my mood isn’t plummeting into despair. It’s just sitting in anger, which, for me, is much more manageable. My stages of grief (denial, anger, bargaining, depression, and acceptance) seem to be mixed up. You’re meant to go from depression to acceptance. I’m going backwards. I was in depression last month, denial yesterday and today I’m angry, so let’s get straight to bargaining: I would give a limb to be out of pain. I would give two limbs to not have this disease. No contest. I will never, ever work myself close to death again and neglect all my friends and family. I will do nothing but altruistic work for the rest of my life, if this is taken away. I could bargain for days.

Now I hope we can just jump over depression and get straight to acceptance.

 

 

by

Diet… Day 51. Wash-Out… Day 12.

Last night I drempt that I had been out socialising with friends and I started to crash. I couldn’t get back home, so I was trying to get my husband to find me a hotel room… I had to lie down… I was going to collapse… please help me, it’s dark and wet and where is everyone?… I just need a bed for a few hours… I don’t want to die… And then rats attacked me. They were fat and wet and squeaking and hanging off of me everywhere… I woke up panting while I was being eaten by the rats. I was scared shitless and didn’t know where I was and my sheets were wet from sweat.

I have, however, been feeling a little stronger the last few days. Not strong, but stronger. My headache has eased up enough to be manageable with epsom salt baths, the tens unit and icy hot spray on my neck. The pain and stiffness in my back doesn’t have me in tears and the exhaustion seems to be controlled. Just a normal ME/CFS exhaustion, not a crippling, slurring, crawling-up-the-stairs exhaustion. I have a new symptom driving me batty: constant pins and needles in my right foot for the last 3 days. It moved into my calf last night, but doesn’t seem to be there today. I have had this before in my hands and I have the Raynaud’s issues in my feet, but I can’t remember this maddening constant tingling before.

My days have become very predictable. I am up at around 8:30am, after about 7 to 7.5 hours sleep. I have GREEN tea now and, for breakfast, homemade granola with almond milk and a smoothie (today was pear, pineapple, strawberry smoothie with flax seed, coconut milk and walnuts) while I do some “work” on the computer (pay bills and curse Comcast and Verizon, see how our budget is going, answer emails, apply for disability but get overwhelmed and stop, try to make an Amazon Fresh shopping list because I can’t go grocery shopping and decide it’s too much energy and too expensive, research ME treatments and start to bang my head off the wall, research MRI stories and wish I had the option of Valium, write in my blog etc.). Then I warm up my muscles with a bath or the hot tub, do some stretches and then a meditation, which I always try to turn into a nap. Then lunch (usually a salad or soup or tuna and I’m currently addicted to Terra Chips) and maybe some house chores if I’m able. Maybe some reading or some more computer time. Another meditation (rest before and after activity, always. Resting is considered only lying down with eyes closed, awake, meditating or sleeping, says Dr. Bested). Walk around the house, if I’m able and then the evening with my husband, having dinner (whatever is leftover or whatever he makes because I’m virtually never able to stand for long in the evening without hitting that pain and exhaustion wall), watching a movie ~ whatever I can manage. Another meditation if I’m not going to bed early. Most of the time I’m in bed at 7 or 8pm, reading/researching. Some of the time I can stay upright until 9 or 10pm. I usually don’t turn off the lights until after 11pm.

My sister-in-law sent me a Stretching for Beginners DVD and usually anything anyone buys for me is too advanced because I’m more decrepit than they realised, but this DVD is good! I have done the sitting, standing and lying stretches ~ one on each day that I’m up for it. So far, it has felt good and I’m so proud of me. And I’m ecstatic that I haven’t pulled a muscle doing it. Maybe I’m finally learning. I walked five laps around my house yesterday. I’ve been wearing a pedometer this week and have taken between 1,700 and 2,200 steps each day. I realise this is not a lot — my dog park visits alone were over 2,000 steps — but, those numbers are including 400 to 500 steps walking laps around my house. There are many, many days when I’m not able to do that and my pedometer would say more like 1,000 steps at the end of the day, so I’m happy. I want so desperately to double, triple those steps. I want to go outside and run as hard as I can for as long as I can. On top of everything else I have had to endure, the patience needed to deal with this disease is mind-blowing. Every time I have to go upstairs or downstairs, I think, “What can I take with me?” so I don’t waste any trip. Every movement is about conservation, every day is planned, every physical feeling analysed to ascertain whether it was caused by too much of some activity or emotion. Damn, I shouldn’t have done laundry… I knew I shouldn’t have chopped those vegetables… If only I hadn’t lost my temper… From now on, I must sit down when I dry my hair…

My mood is much better, which is probably why I’m feeling stronger and my symptoms seem a bit more manageable. I think my Mother and brother being here helped give me strength. Plus, I got to Skype with both of my best friends in the last week and that is like a pain killer. Literally ~ people can be pain killers. It’s amazing.

Something else helped nudge me from defeat into fight-mode: I read that there are multiple studies putting the average age of death of ME/CFS patients in the late 50s. That’s about 30 years too early. On the one hand, I’m very grateful that I might have 20 more years to live and, on the other hand, I’m devastated that I might only have 20 more years to live. I’m not emotional over it. It just caused me to think, Alright, time to get over this now because I’m not going to die in my 50s, dammit. Obviously, I’m not just going to “get over it”, but it made the fight come out a little. I can’t just accept that this is permanent because I don’t want to be one of those statistics. So, time to heal. Seriously.

My back is killing me, I have to stop typing now. So, a moment of gratitude: I am grateful every single day that I am not worse off. I am grateful for walking and talking and typing. I am grateful for eating and drinking and showering myself. I am grateful I was never in a motor vehicle accident, never got fungal meningitis from a steroid injection, never got shot or stabbed or beaten up. Some people are much more… oh, ever so much more… oh, muchly much-much more unlucky than you!

It’s a troublesome world. All the people who’re in it
are troubled with troubles almost every minute.
You ought to be thankful, a whole heaping lot,
for the places and people you’re lucky you’re not!

by

Fight For Your Life

I’m having trouble breathing, still dizzy, painful back and shoulders, stiff limbs, sore throat, constipation and IBS pain, shooting pains in the bones of my right arm that woke me up in the middle of the night (this is a new one), aching hands, no sleep, night sweats (not full-body, just from the waist up), BUT, yesterday turned out to be the best day I’ve had since the 13th. Not as good as the 13th, by any means, but better than the last 16 days of hellish crashing and constant sadness. I was able to stay up and watch a movie when I hadn’t even taken a nap. I dared to use my neck stretcher and my TENS unit, which I can’t do when I’m in extreme pain. And, when I went to bed without a headache, I felt the depression lift. Don’t get me wrong, I’m depressed about this situation, but I don’t think antidepressants are the answer for me. I am instantly a happier, more hopeful person when the physical symptoms ease up. My only fear right now is that my lungs feel like they do before I get a chest infection. Like all that stuff is clogging the alveoli, but it isn’t rattling or cough-upable yet.

I walked around the house 3 times the past 2 days. Not around the block, just around the house. It’s about 100 steps. My new plan is 3 times around the house for 3 days, 4 times around the house for 4 days etc. By November 18th, I will have completed 10 days of 1,000ish steps. I’m going to try coupling that with gentle stretches each day.

I’m trying to have this new attitude that I am going to fight for my life. That’s it. I’m in a battle for me and I’m going to win. Maybe I’ll never be the old me ~ maybe I’ll always be more fearful and less carefree than I ever was in the past ~ but I’ll be a wiser me, a more appreciative me, a simpler me. And one day I will stop lamenting what I lost and start to find joy in what I have. In the future, I hope that’s not such hard work.

Tomorrow I see my PCP (GP) after a 3-month hiatus. Tomorrow my Mother comes to visit for 2 whole weeks. I am grateful for my Mother. I am grateful in every cell of my body that I was blessed with a Mother who is also a best friend, confidante and mentor. I have never lived a day without the knowledge that I was wanted, cherished, supported and loved. Now, that is something to truly be grateful for.

by

Sick, month 11

E., that last post was for you. A tribute to our youth that has taken on a different meaning now.

I spent the weekend in bed for the most part. Today starts a fortnight of medical appointments every single week day. I’m worried about this. I should probably reschedule some, but they’re all ones I’ve been waiting for: overnight sleep study, neurologist, the Good Doctor follow up, a ten-week group therapy class that allows me to keep seeing my therapist for a little while longer for a much lower price tag, albeit in a group. Eek. I’m not a big public sharer, believe it or not, although maybe it’ll be okay because I am an open book, especially after this illness: I have never cared less what people think of what I say or how I look. That doesn’t mean I don’t care if I offend people or I don’t care if I smell, rather, I have no problem wearing no make-up, crying snottily, and talking about my bowel issues and crushing grief. Why disguise? What is there to hide?

Physically, I think I am worse than I’ve been since I left work. The pain is not as bad as it was in the days after my Big Day Out on the 13th, but, when the debilitating pain eases up, the regular pain, aches, exhaustion and flu-like symptoms are waiting underneath. As I mentioned before, I’ve only left the house 3 times in 11 days (for doc appointments). I haven’t gone to the grocery store, the drug store, the dog park ~ I haven’t done anything and I usually would be feeling a lot better by now. I feel faint, I am clammy, I keep getting a pitter-pattery heart and tight breathing, I am absolutely exhausted, I have a bad headache (this morning, there is an expanding and contracting ice pick in the back of my skull on the left), my muscles are stiff (I’m trying to come up with a better description ~ I walk and bend like the Tin Man, like I have immobile metal braces attached to all limbs), both hands and all fingers are in pain (haven’t had that in a while), and a new one: my leg muscles ACHE. They feel like they need to be moved and stretched, which is probably exactly what it is, but, it hurts. I lay in bed jiggling them, tensing them, punching them, trying to get the throb to ease up. And my brain is mush. I’m excited that I can type this morning because last night I could barely form sentences and not feeling smart is scary. Actually, the worst is not feeling quick anymore. The thing I valued most about my brain was how fast I could interpret, anticipate, respond, reason, argue, predict, accomplish… and I could tackle 10 things at a time. The ultimate multitasker. Gone.

Medicinally, I am taking a quarter of a Norco before bed, as well as my thyroid hormones, antihistamine nasal spray, albuterol inhaler, birth control pill and all the supplements and IBS-helping products. That’s it. I want to start something new this week ~ antibiotics or Lyrica or the Chinese herbs or something. I have an electric blanket on my bed, have changed to flannel sheets (heaven) and I’m trying a sun light box thing, which “is sure to deliver a therapeutic sense of well-being in any setting”, says the leaflet.

Emotionally, as I’ve said, I’m not in a great place. When you really start researching M.E., you realise that people don’t recover very often… hardly ever. So, I’m in this terrible shock-plan-grief cycle.

This can’t be happening. Okay, I’ll try X/Y/Z treatment. But, why? I’m just going to get X/Y/Z side effect.

I can’t believe I’m getting worse, not better. Okay, meditate, stay positive, have hope, keep going. But, there was so much I didn’t do, there was so much I didn’t try, there was so much I didn’t accomplish… Now, it’s all gone.

Wow, based on case studies, this can actually get much worse. Okay, I will concentrate on constant rest, every day. What’s the point? I’ll never have a life back, I’ll never have my health back, I’ll never have happiness.

My husband said, “You had the same problem riding a motorbike. You have to look where you want to go and lean into the curve with your eyes ahead of you. You have to focus on the point you want to get to.” I never looked at the end point; I was always afraid of the lean. I was always looking at where I was ~ scanning the ground for danger, watching my speed, making sure I hadn’t left my turn signal on ~ and not where I was going. Which is ironic since I know I am a future thinker and a constant planner.

For example, I have planned the documentary that I am going to make about M.E. I am going to travel this world and interview patients, doctors, people who have recovered, caregivers. It’s going to be informative and moving and it’s going to make some noise.

I have also planned the business I am going to start to bring services to home-bound patients. It’ll encompass everything: walk/wash/groom/play with your dog, wash your dishes, change your bed clothes and do your laundry, clean your home, mow your grass, cut your hair, take care of your feet, talk to you, listen to you, help with your meds, help you fill out paperwork, help you organise your files/calendar/appointments, bring a mobile library of movies, music and books from which you can borrow for free … I will have subcontractors that bring their services to your home. For example, landscapers, vets, acupuncturists, massage therapists, physical therapists, reiki practitioners, reflexologists, guided meditation helpers… It’s going to be epic and so fulfilling.

I have also planned to get a medical degree and go into research on M.E. Or, even better, doctor education. When I have some letters after my name, I will find a platform in the medical community and make some noise.

I have also planned to become a yoga teacher, a salsa dancer, a chef, a marathon runner, a gymnast, a horse rider, a dog trainer and, of course, a writer. Although, maybe, after years of this, I’ll be like Laura Hillenbrand and just not want to go there ~ Not want to write about M.E./C.F.S. because I live it.

Hope is hurting me, but only because I so desperately want to conquer the world. I am grateful for every minute of every day that my legs hold me up and my brain still works.

by

Just an update… not doing well.

Hey everyone,

I’ve taken a turn for the worse. I haven’t really recovered physically from my Big Day Out on the 13th. I’ve only left the house three times in the last week: therapy, acupuncture and the stress test appointment. Eight days without much improvement is unusual for me. That, in turn, has sent my mood into some deep, dark depths. That, in turn, is making my physical symptoms worse. My headache is constant, my back is in very bad pain, I sprained my neck in my sleep and it’s the worst it has been in months, my chest is tight, my concentration and cognitive abilities are shot. I kind of want to (jump, dance, laugh, sing, run) crawl into a hole and come out when they discover a cure for this disease.

I want to go off the birth control pill, but I’m afraid to. I want to take the Lyrica, but I’m afraid to. I want to take the Ambien, but I’m afraid to. I want to take the Chinese herbs, but I’m afraid to. I want to take an anti-depressant, but I’m afraid to. I want to try medicinal marijuana, but I’m afraid to. Yesterday, I wound up taking two quarters of a Norco for the pain, spaced out by about 8 hours and today I feel it ~ a sort of Norco hangover. I know it’s crazy, but my body is that sensitive and I am that sensitive to my body. I feel everything and I don’t want to help my pain, but cause edema or help my mood, but cause chest tightness… or whatever.

More than anything right now, I am mourning the loss of my husband’s old life. He has to do EVERYTHING and I’m not sure how he is holding it together. I am begging to talk about this and cry about this and be counselled about this all the time. He’s like, “What would you like for dinner?” And I say, “My fucking body back. A cure. My pain to go away. My fear to go away. My life to come back.” Only, I am currently unable to say it with a smile. So, I don’t say, “Pain-killers for an appetizer, a winning lotto ticket for the main course and a lobotomy for dessert, please, honey!” Instead, I look at him and start sobbing, “Why would I care about food? I just want to NOT BE SICK ANYMORE, don’t you get it?!”

One of my dearest, oldest friends is coming to see me today as she passes through town. She is vibrant and beautiful and I wish we could catch up without my sadness cloaked around me and my disease stepping on my shoulders. The day before yesterday, summer left. It’s now winter. Just like that. I am grateful for hot water bottles.