Tag Archives: mood

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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.

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Appointments, tests, symptoms

I’m still dizzy. I’ve been dizzy for about 5 or 6 days now. Just unbalanced — things look odd, the world feels like it is slowly drifting to one side. This is different from the acute vertigo attack I had last year at the beginning of this illness and this is different than the “white-out” I’ve experienced my whole life when I stand up because I have low blood pressure. Last night, I woke up with stabbing pains in my stomach. I stayed awake for two hours, deep breathing. I don’t know if it was gas or what. I don’t care — I just want to track it. Other than that, my symptoms are: horrible headache, terrible back spams (mostly lower), my hands ache, neck pain, low-grade fever (99.7 when I took my temperature yesterday), and gritty eyes. But these are more like stone eyes or boulder eyes. Both eyes have what I used to call styes, but, upon deeper Internet exploration, may be something else… They’re not red or inflamed, they are small blisters on the inside lids. My top lip is swollen with some underground cystic acne nastiness. It looks like I was punched in the mouth. I look great, wish I could go out and socialize. But, seriously, I just miss feeling pretty. I miss getting dressed at all, let alone dressed UP. I miss not being in slippers.. a great pair of boots, a belt, jewelry … I miss brushing my hair and putting on mascara. I miss I miss I miss…

My thyroid hormone test results were fine. My liver and cholesterol panels looked fine. My bloodwork looked fine.

My first appointment of the week was acupuncture. He concentrated on harmonizing my shao yang symptoms which, according to Chinese medicine, are the alternating chills and fever I get daily.That night, after acupuncture, my daily headache became excruciating. It woke me up multiple times in the night. I thought it might have increased in severity from the acupuncture, which could have been true, but after the lingering brain cramps this morning, I actually think it might be from the Norco. I realise this is nuts seeing as I only took a quarter, but I can’t take Vicodin because of the headaches they give me and they’re the same ingredients.

I had my follow up with the Good Doctor on Tuesday. She said I seemed very tired and beat down. She thought it wasn’t a bad idea to take a holiday from the supplements if I felt overwhelmed and thought they might be contributing to the headache. But, she said I had to give my brain a holiday, too ~ stop worrying, planning, researching. Easier said than done. She didn’t want me to go off of the supplement and the birth control pill at the same time, which is fine because it’s not possible to go off the pill until I have a decent pain killer option. She had not received the results from the stool sample even though it’s been three weeks. She said once again, I never have these sort of troubles with labs! Stay tuned for the scathing essay I will write one day about medical mistakes. She said narcotics can absolutely give you a headache when you take them and give you a headache when they wear off. All in all, it was a pretty wasted trip. I think she took one look at my face and decided to concentrate on consoling me. Although, she did say she thought I should consider a brain MRI since my headaches are increasing in severity and waking me up at night. I think this disease is an autoimmune problem and/or a deep-seated pathogen that is causing neurological problems on top of all the others. I don’t think I have something that will show up on an MRI.

I also had a therapy appointment that day, too, and, since my chauffeur was also my spouse, I invited him into the session. It was good — for no other reason than they got to meet each other. I cried the whole time, explaining my guilt that he was doing so much and my grief that our lives had disappeared and my regret that we never did X/Y/Z before I got sick. Interestingly and to my relief, my therapist said that everything she has heard from me in the last few weeks is depressive thinking and is brand new. She said this whole year I have had anxiety over my sickness, leaving my career, what the future holds etc. — but that I had been a “trooper”. The depression of the last month is new and situational. I needed to hear that. It helps me say, get your shit together, girl, this isn’t you! When you are consumed by grief, it’s hard to remember what normal feels like. Even normal in sickness.

Today, I talked with an advocate for the M.E. Network with whom my aunt put me in touch (even my extended family has rallied to help me — I am very blessed). She is a nurse and had M.E. and recovered. She is adamantly against psychiatric drugs and she gave me her reasons. I agree with her and it was good to hear a healthcare worker not pushing the meds and talking about how compromised things have become because of pharmaceutical companies and their drug-pushing reps. However, getting a good pain killer and possibly an anti-anxiety or anti-depressant was my next course of action and now I feel hopeless again. Part of me just thought, if I give in and dope myself up, life would feel better even if it wasn’t better. She cautioned that M.E./C.F.S. patients’ brains are already compromised by the disease, so psychiatric drugs can make things much worse. I feel like I’m back to square one. Truly, my Rx is rest, short walks, baths, meditation and time…. while feeling like I’m dying for who knows how long? People have gone through worse. People are going through worse.

I’m grateful I’m not going through worse. This took me three days to write.

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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.

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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.

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Remember to notice the good times.

I would like to mention some good times so nobody thinks the sadness sticks around all the time. Today, I managed to briefly meet friends and go to a very long doctor appointment and still had energy for the dog park. It was sunny and warm and there weren’t very many people there. Once again, I found myself smiling while walking –maybe even strutting— and listening to my music. There’s something liberating about walking in a tank top with the sun shining, a breeze blowing and not being at all cold. At least it’s liberating for someone who spends their life in close contact with either a hot water bottle, hot tub, electric blanket or electric vest (which is made for motorcycle riders, but is wondrous for freezing freaks like I). Speaking of, there was this one day years ago when my husband and I were riding our motorbikes on a hot day through the mountains. I took off my leather jacket and, for the first and only time in my life, I dared to drive fast on the country highway wearing only a tank top (and leather pants and a helmet, duh), with the wind racing over me and the sun beating down on me… My god, I will never forget that feeling. Oddly, today, smiling and strutting slowly in the park, it felt a little bit like that day on the motorbike: a lot slower and safer, but still the freedom, peace, and sun in a tank top.

I thought, “the sun feels like it is physically penetrating my neck and taking away the pain”, so I went with it: I imagined that it truly could. I concentrated on that warmth and willed it to fix me. I pretended it was a known procedure with proven results and I let the sun rays massage my muscle rotten spots (they feel like they must look like rotten spots on an apple) and decided that tomorrow I was going to start winning. I am exhausted, I have a crushing headache as per-usual, and I’m currently going through a fever phase, but, I swear, this illness won’t win. I won’t feel terrible tomorrow and it doesn’t get to make me depressed. I’ll be sad when I feel like crap, I’ll still undoubtedly have a roller coaster of emotions and my commitment will falter, but, I got this. The sun gave it to me.

I am grateful for the sun.
Little darling, it’s going to be a long cold lonely winter.

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