Care Package for People with Sjogren’s and Depression

posted in: chronic illness | 4

Day 9 – Community Care Package. Create the perfect care package for your members or fellow patients.

Note: A Sjoggie is a person with Sjogren’s syndrome.

Stained Glass © 2010 Jane Waterman
Stained Glass © 2010 Jane Waterman

A care package is all about comforting. Happily, there are a lot of things on this list that will comfort both people with depression and Sjogren’s syndrome. If you’re a friend or loved one of a person with these illnesses, I hope my care package will give you some ideas. As you can see, there are many simple things on the list that people take for granted, but are often difficult for sick people to do for themselves.

1)        Visits – being ill can be very isolating. Delivering a care package is a great excuse for visiting. If your friend has an illness, ask if they’d like you to visit (it’s not always a good time, so always call in advance). When visiting, watch for cues and keep the visit short if your friend or loved one needs to rest.

2)        Gentle hugs – these are the most important and versatile part of any care package. Not matter the reason someone’s feeling crappy, these usually make one feel a little better. Ask for and offer hugs as often as needed.

3)        A favourite soft toy – no matter how old you are, if you have to retreat to bed often, a teddy bear can be a great companion and source of free hugs, especially if you have to wait for the hugs described in 2).

4)        Nutritious, reheatable meals and snacks – if you love to cook, packaging one or two spare meals when you cook for yourself or your family can make a huge difference. This is one area of self-care that’s very difficult for a person with chronic fatigue or depression and goes a long way toward improving quality of life.

5)        Shopping – likewise, shopping for easy-to-prepare food and personal care items can be a great help to a sick person. Ask your friend or loved one if there’s anything they’d like you to pick up for them.

6)        A large 7-day-a-week pill reminder box with AM and PM compartments – sometimes there are a lot of medications required (I’m presently trying an alternative antidepressant and need to take 20 pills a day for this alone) and many Sjoggies suffer with brain fog that make it impossible to remember if medication has been taken.

7)        Painkillers – it’s impossible to rest when you’re in pain. For me, painkillers turn the pain down enough so I can get some rest. Pain is a common problem for Sjoggies with systemic forms of the disease (often with early onset of Sjogren’s).

8)        A favourite blanket and pillow.

9)        A pillow mountain for sitting up in bed.

10)     A bed table.

11)     For Sjoggies, eye drops, nasal gel and mouth swabs are essential.

12)     Heat pads and ice packs – it’s not uncommon for me to have a heat pad on my side, shoulder or other pain ‘hot spots’ and an ice pack at the base of my head for headaches.

13)     Healing balms – I like to use oil-free creams and balms that are lightly scented (heavy scents can be overwhelming). I find Myoflex awesome for the muscular pain associated with fibromyalgia and costochronditis.

14)     Aromatherapy – scented soy or beeswax candles, or aromatherapy oil and burner. Gentle scents like lavender help to promote sleep and rest.

15)     An at-home spa session – pampering is something most ill people are too tired to do for themselves, and can’t go out for due to the energy and cost involved. If you can help treat someone to a spa or makeover, it can make people feel better about themselves and give them a real lift.

16)     Internet – for both Sjoggies and people with depression, the ability to talk to others with similar conditions or interests is essential, especially if illness prevents one from getting out and interacting with others. Generally people who don’t have these problems dismiss the importance of social networking, but as someone who met my spouse and most of my dearest friends thanks to the internet, I can honestly say I can’t live without it.

17)     Art – there’s nothing more important, especially if one is frequently bed bound, than beautiful art to cheer up the room. I like lots of bright colours – the post impressionists, especially Van Gogh, are favourites. Find out what art your friend enjoys.

18)     Music – soft music, especially music that’s good to listen to while drifting off to sleep and rest. I love Liquid Mind, Deuter and Enya for healing.

19)     Books – like art, books are wonderful for taking one on a journey, especially when stuck in bed. There are limitations to keep in mind. Holding books, especially for Sjoggies with joint pain, for long periods can be problematic.  Reading is another problem with dry, sandpapery eyes. Another problem is difficulty reading small print in books. I used to be able to read a prescription bottle at ten paces (okay, maybe one), and then my vision dramatically degraded in a couple of months (I’m getting older).

20)     A lightweight laptop or tablet for reading books and using the internet. I’ve used my mobile phone in a pinch, but you have to turn a lot of virtual pages. Many classic books are available from Project Gutenberg and many other websites and software/mobile applications (type “free classic e-books” and related search words into Google to find them). The neat thing is you can use these devices to enlarge the text to make reading more comfortable.

21)     Art, craft and writing activities – as great as it is to enjoy other people’s creative efforts, it’s also wonderful to be able to create your own projects. You can create art using computer software (also known as digital art) using free software including Paint (usually installed on most computers) and more advanced image-making programs such as the GIMP (found at gimp.org). I use the program Artrage (found at artrage.com) to create a lot of the digital paintings at Blackbird at Night. Scrapbooks, scissors, glue and magazines are also excellent for creating collages for healing work and self-expression.

22)     Netflix/cable – You can catch up on your favourite genre of movies or TV shows on sucky days when you’re not feeling well enough to read or create.

Feel free to add your own suggestions in the comments. I’d love to hear what you’d put in your care package!

Blessings,
Jane

4 Responses

  1. Annette McKinnon (@a
    | Reply

    I got an electric mattress cover so that I can warm up the bed before I get in. Also I find a bean bag style lap desk can be helpful for reading in bed or on a chair.

    I have never seen one of these except in an aromatherapy display but I have friends who use small personal humidifiers especially at night.

    That is a lot of pills you are up to. It's a task I hate and have to do today – counting all the pills into their little compartments

    • Jane
      | Reply

      I had one of those electric blankets in Australia. What they call an electric blanket here on the west coast is rather flimsy compared to those ones – you can't lie on them, only pull them over you. The problem I have is I have like a permanent hot flash going most of the time, so if the bed gets too hot I wake up and throw everything off, which kinda defeats the purpose… I have a humidifier, but it's so large it keeps me awake – I must look out for one of those smaller ones.

      Yeah, I hear you on the pills. Before, I took a Prozac and I was done, and now it's 20 frickin' 5-HTP and L-tyrosine pills, but I wanted to get off it for a while – been on Prozac for most of 20 years, and it's one of those periods where it's stopped working. I would not take even one pill as a child, so it's kind of ironic I'm taking about 30-36 a day depending on how many pain pills/gravol I need. What a life. :)

  2. Annie
    | Reply

    Cats are a huge help for me, stroking them is purring and there is nothing nicer than a cat on your lap.

    When well enough a walk by the sea lifts my mood and helps my joints.

    • Jane
      | Reply

      Hi Annie,

      Thanks for sharing your thoughts. I agree that our companions are a huge help. We have two beagles at home, and I love to cuddle with. It's so comforting, and the beagles love it just as much. I also love the sea. As you say, not always easy to get to or to do, but I have always lived near the ocean and when I go, especially in the cooler months, it really helps. I'm glad you have things in your life that are self-nurturing. I think that's so important for us all!

      Blessings,
      Jane

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