What I Like About Being Sick

Strange title, eh?

I recently read an article written by Toni Bernhard, who has been chronically ill for a long period of time. She even wrote a book with the unique title of How to Be Sick. In the article, she suggested we turn our complaining on its head by listing what we like about being sick. Crazy talk!

So don’t get me wrong. I HATE my chronic illnesses and invisible disabilities. I HATE them every minute of every day. I HATE all the losses I’ve experienced because of them. I MOURN the loss of who I once was, the life I had, the changes to my present and future, the uncertainty, the decreased income, my lost career and so many other things.

But I digress.

That said, is there anything good about all the suffering and pain of the past two years? Anything?

Perhaps these:

I don’t have to wake up to an alarm clock.

People are not depending on me (my children are out of the nest).

I don’t have to commute to work.

I can take the required 2-3 hours to shower and get ready.

I can control my diet.

A person’s life and health are not in my hands (oncology nursing).

I don’t have the stress of my job.

I save on commuting costs.

I can stay indoors in inclement weather.

I’ll never have to shovel the driveway again (because I can’t).

I don’t miss any events/functions because of work (only illness).

I can spend more time with my family.

I can spend more time in in-depth Bible study.

I can crochet.

I can write on good days (I mean, less-bad days).

I can read (whether I retain it or not is another issue).

If I have insomnia/poor sleep I can rest the following day.

My schedule is wide open for appointments.

I can prepare slowly (weeks in advance) for any guests.

I can volunteer as my strength allows.

When I have a Fibro flare or Chronic Fatigue Syndrome crash I can suffer without any guilt about missing work/events.

I can clean my house one room at a time, or not at all.

I can wear comfortable clothes.

I can plan meals and budget.

I can see my grandson more often!

That list surprised me as much as it did you! There are indeed some blessings in the midst of this season of suffering, thank God!

How about you? Can you come up with your own list?

Interview with Suffering

Pia: My guest today is someone with whom I’ve only recently become acquainted. Welcome Suffering.

Suffering: I don’t hear sincerity in your voice, Pia. I know you haven’t been happy since I came into your life.

Pia: I must admit that’s true. You made such a sudden appearance in my life with pain out of nowhere.

Suffering: True, and that was just the beginning of your health troubles.

Pia: Yes, other than all my 100 health issues, (really, 100) the worst being Fibromyalgia syndrome and Chronic Fatigue Syndrome, I’ve seen 7 specialists (gynecologist, cardiologist, neurologist, rheumatologist and gastroenterologist, general internal medicine, ENT, pain doctor), 6 other health care providers (family doctor, naturopath, dentist, physiotherapist, chiropractor, and massage therapist), I’ve had 3 visits to ER, numerous blood tests, 3 MRIs, 2 CT scans, abdominal ultrasound, 3 x-rays, bone density tests, nerve conduction tests, EMG, gastroscopy and colonoscopy, urgent angiogram, 2 ECGs, sleep studies and other tests. A few other stressful incidents were the death of our dog and leaving our church after 28 years!

Suffering: When you put it that way, it does sound rather overwhelming.

Pia: Try living it.

Suffering: Well, I was your constant companion throughout these few years. And you do know who sent me, don’t you?

Pia: I do know. In all that’s happened to me, I’ve never been tempted to ask, “Why me?” As a nurse, I’m a realist, and as a Christian I believe that even this has come from the hand of a loving God.

Suffering: That’s very mature of you, Pia. Most people rail against God when I come around.

Pia: He’s blessed me with 49 great years before these two years of suffering. Even if I have to live with this the rest of my life, how can I really complain?

Suffering: I must have caught you on a good day. There are some days when you seem more depressed.

Pia: I’m not depressed; just discouraged. If I was depressed I wouldn’t feel any joy in life. But I do. So much so that on good days, or “less bad days” as I like to call them, I overdo it. But then it causes a crash and I’m useless for a few days.

Suffering: So isn’t that a silver lining, then? Resting and daydreaming with your feet up, doing your favourite things like reading or writing?

Pia: If only that were the case! When I have a Fibro flare I’m in pain, worse than my usual daily pain. Nothing relieves it. And the exhaustion from the Chronic Fatigue Syndrome is overwhelming. I always say that’s too tame a name for how it feels. I have to rest for half an hour just from climbing the stairs or taking a shower. And both of my illnesses cause cognitive impairment so I have trouble retaining what I’m reading. My writing is only possible in short bursts. Even my kindle audio, which I used to set to read to me, bothers me because I’ve also developed electromagnetic hypersensitivity. That also limits my time on the computer. So those things I loved, which made me who I am, are limited.

Suffering: You’ve had many losses, haven’t you?

Pia: Yes; my health, my career, my income, my hobbies among others.

Suffering: What about your spiritual life? How’s your faith holding up?

Pia: Although it’s been my worst two years, physically, they’ve been my best spiritually. I really feel God’s presence daily. I’ve been praying more, and reading my Bible daily. And I’ve been attending our Women’s Bible studies. We went through the book of John and we’ll do Genesis in the fall.

Suffering: Did you know that your eyes lit up when you shared that?

Pia: I believe it. At the end of our study on the book of John I presented a 20 page summary of our study. I prepared it slowly over the months of our study. Whenever I teach the Bible I feel like my old self. I can’t teach on the fly anymore, because I can’t recall words or ideas like I used to, but if I can prepare in advance, I feel like I have something to share, and I feel useful.

Suffering: So are you finding some joy in the midst of your suffering?

Pia: Yes, definitely. And my husband is so supportive. He always asks if I’m resting, and never complains about our messy house. He jokes that we’ve tested all our wedding vows; richer, poorer, sickness, health, better or worse, a few times over.

Suffering: What else have you done to learn how to cope?

Pia: That’s the thing. This learning to live with a chronic illness is a new normal. It took a while to accept that it wasn’t going away. I did fight against it at first. But I couldn’t wish it a way. Like diabetes, once you get it, you can’t un-get it. Once I got to that point, I researched my illnesses and found facebook groups to learn more. Then I started my own support group/blog/facebook group called Cope with Hope; for people with Chronic Illnesses and Invisible Disabilities who still believe in the goodness of God.

Suffering: Like you?

Pia: Yes, like me. I did it as much for myself as for others. Although some of my latent leadership skills are coming out (only in small groups), the nine people who’ve come out say they’ve been blessed.

Suffering: What’s next for you?

Pia: Probably more of the same, except I need to scale back on my commitments. I forget sometimes that I’m not my old self, and I get overwhelmed easily, and don’t handle stress well anymore. I used to be a high functioning multitasker. Now I can only manage one or two tasks per day. There’s no cure for any of my illnesses, so I’ll just try to manage them, and spend my time going from appointment to appointment. I’ll probably never be able to nurse again, and that makes me sad, because I loved my job as an Oncology Nurse. I’m just waiting on God to show me what I can do in this season of my life. And I want to learn whatever He wants to teach me.

Suffering: How’s your book coming along? Any chance that could be the direction that God is sending you?

Pia: Possibly. It’s with an editor now, which is good, given my cognitive issues. I hope it will one day be out there. Benaiah’s story needs to be told.

Suffering: So I’m not all bad?

Pia: No, I know God sent you into my life for my good and His glory, and He can make something beautiful emerge from even this. Don’t get me wrong, I hate my illnesses, but I think of the character, Much-Afraid in Hannah Hurnard’s book, Hinds’ Feet on High Places, which I read when I was a teen. Her travelling companions were Sorrow and Suffering. At the end of the journey all three of them received new names. I hope that would happen with me. I don’t want to become bitter. God’s been so good to me. I just noticed, for an interviewer, I've done most of the talking.

Suffering: That's how I like it. I want the people who have become acquainted with me to gain insight into the positive side of me.

Pia: Thank you for visiting today, Suffering.

Suffering: Oh, didn’t you know? I moved into your guest room. I’m here to stay.

 

Grandson's Dedication

May 2015 Journaling

1.    I am having so much pain. My daughter and grandson came to stay overnight. I wish I had the energy to look after him. I don’t trust myself to go up or down stairs with him, because I’m so unsteady.

2.    Pain again. No energy. We went out for dinner at Port, about the nicest restaurant in Durham. It’s on the lake at a marina in Frenchman’s Bay. The occasion was our last hurrah before our income drops; my birthday, mother’s day for me and my mom, and bon voyage for our daughter who is going to England on Tuesday. Rested all day before it, and afterwards. Don’t let the smiling face fool you, I’m in pain.

3.   Went to church, then to Burlington for our grandson’s dedication service. Even got back in time for our evening service. I really wanted to catch it, as this series in 1 Samuel is related to my book, but to say I was wiped out is an understatement. I’ll post a pic of our family.

4.   Last day before our daughter leaves for England. I’m so excited for her to have this opportunity to study international law at a castle.

5.   Our daughter arrived safely in England. Praise God! I’m a nervous flyer at the best of times, but am even more nervous with all the airline incidents that have happened. Also, last night my husband came in for a walk and his ring finger was swelling up rapidly and turning blue. It seems a mosquito bit him when he was walking in the ravine area near our house. He reacts that way to bug bites. We went to the mall last night in the hour before it closed, trying to find a jeweller who could cut the ring off, but either they didn’t have the tool, or the jeweller who knew how to operate it had left already. The swelling subsided a bit and today he went to a local jeweller who ended up being a believer. He said, “you came in here for a reason.” And when he cut the ring off, he was able to not wreck the inscription. The jeweller said, “that was the Lord.” J

6.    Still waiting on my LTD approval. I don’t know what they’re waiting for from the doctors, because they were already given all the most recent documents. So frustrating. I am already going down in income by 50% and this little bit would make it only 35% but still a hardship. This is when we see if we are trusting God to provide.

7.   Another glitch. I received my final pay two weeks ago and was told I’d automatically be mailed my Record of Employment so I could at least collect EI. Now when I call about it they say I’m still listed as active so it hasn’t even been mailed to me. That means I have zero income. I am feeling the holes in my social safety net.

8.   The trips to the chiropractor have been helpful. When I walk, I am more upright, and my limp is hardly noticeable. I still have trouble on stairs, as my balance is precarious.

9.    Famous people who have Fibromyalgia: Morgan Freeman, Paula Abdul, Florence Nightingale. It's an invisible illness, not an imaginary one.

10.  We went to babysit Benny overnight on Friday because my son-in-law was in a wedding. Today for mother’s day we went to my mother-in-law’s house because she is going to be 70 this week. She looks amazing for her age.

11. Feeling stress over finances. I guess it can’t be a true test of our trust in God unless we see our utter dependence on Him. I’ve still waiting on my LTD and my EI is delayed as well, so we are basically at 0 income for me this month. Yeah, zero.

12.  Today is Fibromyalgia Awareness Day. Yay, me! (sarcasm)

13.  Barely managed running around yesterday, from EI office, to doctor’s office, back to EI office, then home to eat, then to our third Cope with Hope meeting. In spite of my exhaustion (and I missed the Tuesday morning Bible study), I’m glad we went. A friend presented on Lyme Disease, and we talked about the other stages of Understanding Chronic Illness, and then I taught a devotional based on one I wrote a few years back, as I wasn’t up to writing anything new. They’re a great bunch of women. I do this as much for myself as for them. Today I went for a massage and a chiropractic appointment. Can’t manage much else for the day.

14.  Also, my doctor started me on BP medication as my BP has been elevated for about half a year. We kept watching it and hoping it would go down on its own, but no. Sigh, one more thing.

15.  My mom is in London visiting her brother and sister-in-law, so I have no car.

16.  Lovely day. Finally spring like temperatures.

17.  There’s no evening service tonight because of the long weekend.

18.   It’s Victoria Day here in Canada. We drove out to visit our grandson. My daughter made a delicious mango salsa and then a teriyaki chicken stir fry. This afternoon we took a walk in the ravine. A baby racoon was in a neighbour’s yard. Its mother must have died. The city won’t come and take it away unless it’s sick or dying.

19.  Bible study this morning, then trying to deal with different groups to make some sense of what’s going to happen next with my LTD. I hate talking on the phone, and I’m so tired. Just tired…

20.   Chiropractor today, she’s been so helpful for many of my symptoms. I almost have hope that I could have some semblance of a pain-free existence.

21.  Trying to drink some lemon water; hot water with lemon juice and a drop of lemon essential oil. It’s supposed to help with inflammation.

22.  Off to a ladies’ retreat for the weekend. I’ll have to have my feet up most of the time, and nap frequently, and I’ve put in for special foods, but in spite of it all, I think I need this, spiritually.

23. The weather is beautiful this weekend, and this camp, Elim Lodge is surrounded on three sides by Pigeon Lake. The topic is the Christ-like 21^st century woman.

24. This was a great weekend. I was able to rest on Saturday. Friday was the hardest day for me. I enjoyed this time sharing a room with my mom. On Friday she told some of the women she wasn’t a believer. She feels such guilt about her life. I pray she can move from conviction to forgiveness. Christianity isn’t about guilt; it’s about forgiveness.

25.  Exhausted, but I pushed myself to go to the one hour Walk and Talk with the women at church because we had a debrief meeting about the retreat. They’re an organized bunch and always want to improve these things.

26. I went to Bible study, we’re almost done the book of John. Then I went for bloodwork since it’s been two weeks since I started on blood pressure medicine. The few times I’ve checked it, it’s been very good. I guess I needed the medicine. Then my husband and I walked for an hour in the neighbourhood.

27.  Pushed myself to do laundry and vacuum two rooms. Worn out. Resting on the couch reading. I’ll be happy if dinner gets made.

28.   Lovely weather. Winter was too long. No complaints about heat, except that I can’t tolerate it as well as I used to. Tonight we have tickets to the WINGS gala. It’s a masquerade. I’m wearing the long gown I wore to my daughter’s wedding, and a mask from the party store. I need to rest all day to be able to last through the evening.

29.  The Gala was lovely last night. So excited to be a part of that great pro-life ministry.

30. To add to our financial tension, our CRV needed the air conditioner fixed, and the next day, the brakes. Nothing that can be put off, and of course, it had to go on our credit card. Not the best choice, but hey, still no income.

31.  Today I could only lay down on the couch, barely even get up for pain pills. My brain felt like it was shaking. I’m wondering what God’s purpose is for setting me aside. I feel so useless.