30 Things you may not know about my illness: ME/Chronic Fatigue Syndrome

1.       The illness I live with is Chronic Fatigue Syndrome. I have others but I’ll focus on this one.

2.       I was diagnosed with it at age 51.

3.       The other name for it is Myalgic Encephalomyelitis (ME), which means an inflammation of the brain and spinal cord, which is what it feels like. A newer name is SEID. Severe Exercise Intolerance Disease, which makes it more serious by calling it a disease, but the name doesn’t take into account the other symptoms.

4.       Since it is a syndrome, it has a cluster of symptoms. It’s much more than just fatigue.

5.       It’s an invisible illness, not an imaginary one.

6.       It came on quite suddenly in December.

7.       It is considered both an auto-immune and neurological disorder.

8.       It’s linked with my other problems: Fibromyalgia syndrome, Multiple Chemical Sensitivities (MCS) and Electro-magnetic Hypersensitivity (EMH).

9.       Because of the other illnesses the symptoms of pain, cognitive impairment (Fibro fog) and sleep issues are cumulative.

10.   The biggest adjustment I’ve had to make is to have to leave my job (Oncology nursing), which I love. I’m currently on long term disability.

11.   The hardest part of my day is deciding what my one task will be for the day. I can usually only do one thing; an appointment or a chore. The rest of the time spent on the couch.

12.   I feel useless. I used to be a productive member of society and church. I used to be able to do so much, like host dinner parties, etc.

13.   Before my LTD was approved, I felt worried about our finances and feared losing our house. I know it added to my husband’s stress as well.

14.   I can’t look after my grandson like I would have if I was well. My balance is so bad, I’m nervous to carry him, and won’t risk going up or down stairs with him.

15.   One gadget I’ve come to appreciate is my CES machine (Cranio-electro –stimulator). I can set it to sleep with energy, sleep or pain. My husband calls it space invaders.

16.   Unless you also have to rest for 20 minutes after climbing the stairs or taking a shower, your definition of fatigue is irrelevant.

17.   Three years ago I was taking one pill and two supplements, now I take 90 pills and supplements. Every. Day.

18.   If I had to choose between an invisible illness or a visible illness, I’d still choose invisible; only because I don’t like to call attention to myself.

19.   I wear comfy clothes now. My motto used to be fashion before comfort, now it’s comfort before fashion.

20.   Regarding alternative treatments, I’ve found they have been immensely helpful, specifically chiropractor, massage therapist, and Naturopath in relieving many of my symptoms. I have a good team around me.

21.   One of the worst symptoms is a feeling that my spine and brain are being whisked. When they vibrate, I can’t do anything until it passes.

22.   I’ve seen an Athletic Therapist who specializes in ME patients. She started me on an exercise program. My heart rate can’t go over 105 I can only do anaerobic exercise and strength training. It’s all about pacing so I don’t crash.

23.   An ME crash occurs if I’ve been “overdoing it”. For example, I generally can’t clean my house. But one day I had a big more energy and dared to vacuum one level, clean my bathroom and do a load of laundry. The next day I couldn’t do a thing, I spent it on the couch.

24.   I’m pleased to say that compared to a year ago, I have some significant improvements to my sleep, pain level and cognitive improvement. The exhaustion is not much better, and my MCS, EMH are unchanged.

25.   It’s been three years since my health deteriorated and one year since the ME hit and I can barely remember what I used to be like.

26.   I sometimes wish I had a disabled parking sticker because whenever I go to the train for a downtown appointment, I have to park at the far end of the parking lot, and it’s the equivalent of a two block walk to go to the train. It wears me out and adds to my ordeal.

27.   When I went to get my car licensed, I had to stand in line for 1 ½ hours! I may bring a cane with me into a similar situation in the future, so people won’t look at me funny if I grab a chair to rest.

28.   One of my doctors did a balance test before my treatment. I swayed with my eyes closed and couldn’t stand on my toes with my eyes closed for more than 2-3 seconds. It’ll be interesting to see a change after my treatments.  It’s caused by a swelling on the brain.

29.   Even if they can clear out my liver and improve my MCS and EMH, which would be great, they won’t be able to fix my ME or Fibro because they’re chronic.

30.   In spite of this, I’m glad it didn’t hit me until my children were grown. I’m also thankful to have such a supportive and understanding husband.