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

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.

11 comments

  1. Christel Goetsch says:

    Omg! Your rant was so appropriate…I couldn’t have said it better!

    I often wonder what it would be like to be ‘normal’, or even just average in how I feel and am able to do things and have a life.

    Hang in there, as we all will (and must) do!!

    Christel

  2. Connie says:

    Sometimes we just need to vent. I’ve been having my own pity party this week. It’s such a relief to hear you put it into words! Thanks, and keep smiling.

  3. Joan says:

    Well said. I applied for PIP recently and when they get to the part we’re they ask you what is a normal day I left tell them I don’t have normal days any more. And I would love to have said everything you have spoken about.
    There is nothing like a good rant.. x

  4. Ed Potokar says:

    As the father of someone who suffers from Scleroderma…I appreciate the above article. Obviously I will never be able to understand the day to day problems my child has to endure! I want to say the right things and doing the right things for her…but many times I do not know what they are. Unequivocal love is not the problem..I have that for her. I want to do more but I know I can’t. Loved ones need some guidance and help as well…only to make the patient not have to additionally worry about us.

    • Lisa Goodman-Helfand says:

      Thanks so much for the comment Ed. I hope to address the issues you’ve brought up in future articles.
      All the Best,
      Lisa

  5. Jane Rock says:

    You have summed up my feelings exactly. And sometimes it is easier to fight that and sometimes you just have to give in and accept with grace……

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