There’s No Vacation from Scleroderma to Feel ‘Normal’ Again

For the past week, I’ve had a terrible cold. I’m low-energy, stuffy and cranky, and I can’t get comfortable enough to sleep. In a few days, my cold will hopefully pass and I’ll feel “‘normal” again. Ah, if only my “normal” were really normal.

For 32 years, I’ve really never felt “normal.”  This loss of normalcy is something with which all chronic disease sufferers must wrestle. It’s crippling to contemplate the magnitude of scleroderma and the impact it has had on my life. I thought I came to terms with this years ago, but the truth is, I don’t know if that’s possible.

Sometimes, I daydream about taking a vacation from scleroderma. On this fantasy vacation, I would (in no particular order)…

1. Wear clothes that I like
2. Walk out the door without three layers of meticulously applied makeup on my telangiectasia-ridden face
3. Wear a bathing suit and go swimming
4. Walk barefoot
5. Plant and care for a garden
6. Take a bike ride
7. Run a mile
8. Get a massage
9. Get a manicure and pedicure
10. Sunbathe
11. Do yoga
12. Go rock-climbing
13. Skydive
14. Take a salsa dancing lesson
15. Sit “pretzel style” on the ground
16. Go horseback riding
17. Buy a whole new wardrobe
18. Open a bottle of water
19. Do weighlifting
20. Walk through the frozen food aisle without gloves
21. Play basketball with my son
22. Take a dance class with my daughter
23. Go kayaking with my husband
24. Drink a glass of wine
25. Go to the dentist without crying

I could go on and on with my wish list.

I try to be a pretty upbeat person with an attitude to match, but sometimes I’m simply sick of being sick! I’m sick of living in a body that refuses to function properly. I’m sick of all the doctor appointments, the chronic pain and the limitations scleroderma places on my life. I’m sick of finding out I need gum surgery, and having to worry about what that means in terms of complications from scleroderma. I’m sick of not being able to open packaging, cram a book onto a bookshelf or twist off a bottle cap. I’m sick of rarely finding clothes I find attractive, and mostly settling on garments that hide as much of me as possible.

I’m sick of concealing my face behind makeup. I’m sick of being stared at by strangers. I’m sick of going to bed in pain each night, and waking up in pain each morning. I’m sick of all the anxiety and uncertainty that accompanies an incurable and chronic disease. I’m sick of fighting a body that’s been fighting me almost my entire life.

I’m sick of the fact that unless we find a cure, fellow patients and I will never, ever get a single solitary second’s worth of a vacation from this disease.

Most of all though, I’m sick of this self-pity party I just threw myself. Rant over. That’s all.

To learn more about the author’s life with scleroderma, visit her site.

Find out more about Lisa’s memoir, Does This Hospital Gown Come With Sequins?

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to scleroderma.