Today I am bringing you the first ever guest post to feature on nicolajogston.com. The post is by Pamela a fellow spoonie and chronic illness fighter. I pass you over to her and she can tell you all about her life with chronic pain and invisible illness.
My name is Pamela Jessen and I live with Chronic Pain, Chronic Fatigue, Fibromyalgia and several other Invisible Illnesses. It’s an awful thing to live with constant pain, as well as having to try to describe it to people who just don’t “get it”. Having invisible illnesses is even worse, because there is nothing obvious that jumps out and says you’re in pain – no physical deformity, no cast, no stitches.
My pain story goes back many years. I remember suffering widespread body pain from the age of 15 on – I’m 56 now. Mostly it was mild for many years, but it was enough that I knew it wasn’t normal. I ached all the time, but back then, I was living a pretty rough lifestyle and it just wasn’t at the forefront of my mind. I finally settled down, had kids, entered and left a couple of relationships, and then met my wonderful husband.
I’ve had my share of surgeries over my life, including appendix and uterus, and in 2004, a stomach surgery for severe gastric reflux disease. Then in 2006/2007, my body went into overtime with health problems, and I ended up having surgeries to remove my left ovary, gallbladder and right ovary – all three within a 6 month time frame. Talk about body trauma! My surgeon also discovered that I had scar tissue covering my bladder and bowels each time he operated and that I’d probably had endometriosis for years without knowing it. It certainly explains a lot of why I had so much pelvic pain over the years.
The conditions I have
Over the years, my list of health conditions has grown as well, and all of them are invisible. This is what I live with on a daily basis:
• Chronic Pain / Chronic Fatigue Syndrome
• Fibromyalgia / Myofascial Pain/Trigger Points
• Osteoarthritis (in all my major joints – I had my right hip replaced in 2017)
• Forestier’s Disease (aka D.I.S.H.: Diffuse Idiopathic Skeletal Hyperostosis)
• Type 2 Diabetes (on insulin)
• Trigeminal Neuralgia
• Bipolar Disorder
• Pelvic Adhesions/Scar Tissue/Chronic Pelvic Pain
• Bone spurs on fingers on right hand, plus inflamed tendons in right palm
• High Cholesterol
• Brachydactyly Type E
• Reynauds Disease
• Vulvar Intraepithelial Neoplasia 3 (VIN3) – now surgically resolved
My family doctor is wonderful and has tried many things, but unfortunately, it seemed that narcotics were going to be the answer for the longterm fix along with other medications. While living in Calgary, AB Canada, I was referred and accepted into outpatient treatment at the Chronic Pain Centre (I now live in Victoria, BC, Canada) and there, I worked with a team including doctors, physiotherapists, a psychologist, and others. We tried several types of injections for the trigger points, including Botox, but nothing helped. I attended group classes at the clinic for relaxation, diet, exercise, etc. and it does help to have other ways to focus and cope with Chronic Pain, no matter the source. It also helps to be with people who “get it”. Unfortunately, nothing we did actually lessened the pain or made it better.
I have been on Long Term Disability from my job since 2009 as I can’t sit, stand, lift or carry for more than a few minutes at a time…I’m constantly having to move or shift position to prevent my muscles from stiffening or going into spasm. The doctor who diagnosed my Fibromyalgia and Myofascial pain said it’s among the worst he’s ever seen. I’m never pain free, I’m constantly exhausted because I can’t get into the deep restorative sleep….I’m loopy and dizzy from drugs and as much as I keep a positive attitude, I’m frustrated beyond belief that this is what my life has become.
My body is hypersensitive to many things including the feeling of labels in clothing, loud noise, smells,…you name it.
My husband is a saint, and treats me like a princess, but as wonderful as he is, he can’t feel what I feel. Sometimes, the best thing I can do is soak in a hot bathtub and try to focus on other things, but nothing ever makes the pain go away. I pray a lot – my faith in Christ is huge, and I allow myself to be taken care of so I can focus on healing. That was a hard step for me, but a necessary one. I’ve always been the doer, but now…I need to step back and take care of me.
The little things that help
I’ve made a list of comfort items that really help me and I hope will help others too:
• Heating Pad: Many people find using a source of heat to be extremely comforting. Just remember to take safety precautions with your skin, and never use a deep heating rub with a heating pad at the same time, or you’re asking to be burned.
• Ice Packs: In much the same way as using heat, ice packs can be a lifesaver for pain. Some people with chronic pain use both at the same time…heat in one area and ice in another. Experiment with what works for you.
• Eye Mask: When you’re having trouble sleeping, this can be quite soothing, especially if you prefer to sleep in complete darkness. It’s also helpful for Fibro induced migraines.
• Ear Plugs: Again, super helpful to block out distractions to help you sleep better and to aid when Fibro migraines strike.
• Epsom Salts: Soaking in a hot Epsom Salt bath is one of the best things you can do to soothe aching joints and muscles. There has been an explosion in Flotation Therapy lately in cities all over North America. People spend up to 90 minutes at a time in skin temperature Epsom Salt flotation therapy tanks, literally soaking up the benefits of this mineral. The ratio of Epsom salt to water in most tanks is such that many are more buoyant than the Dead Sea!
• Magnesium Rub or Gel: Another essential mineral needed by the body, most of us are deficient. Using a good rub or gel can help alleviate pain. Ask your doctor if a supplement of Magnesium is right for you as well.
• Pillows: Pillows for sleeping, pillows for propping, pillows for wedging, body pillows…wherever you need some extra support, finding the right pillow can be crucial to your comfort. Firm, medium or soft; feather or foam, whatever your preference is, you’re going for comfort, so let your body be the guide here.
• Shower chair: If bathing is uncomfortable for you, but showing tires you out, consider getting a shower chair. They come in many sizes and shapes and can be found in lightweight, portable designs.
• Kindle or e-reader: Take your entertainment with you or leave it at home, but always have your favourite books at your fingertips with an e-reader. There are many services that let you download books for free including your local library.
• Body Lotion: Your favourite scent can help keep you smiling.
• Magic bag/wheat pillow: These are the type of bag you can either microwave or freeze and use for spots on your body for various aches and pains
• Scented candle: Some people find having scented candles burning helps them to relax. Try different scents according to the seasons or just choose your favourites.
• Mints or Gum: If you tend towards having a dry mouth, you might want to keep mints or gum handy, or hard candies to suck on. I personally like Tic Tacs as they are small, come in lots of assorted flavours and are easy to pack in even the smallest of purses.
• Colouring book: Currently one of the fastest growing trends to help relax you, there is an endless array of styles and designs to choose from. I have several on the go at any time, and use both pencil crayons and felt markers to colour mine. Jenny Lawson’s last book is part story/part colouring epic.
• Herbal Tea: Even if you’re not normally a tea drinker, a good herbal tea at night (decaffeinated of course) can be a wonderful way to unwind before falling asleep. Many delicious flavours are there to choose from; I personally like fruity flavours the best.
• Water to stay hydrated: Whether you use a water bottle or fancy decanter, having cold fresh water is essential in maintaining optimal good health for any condition. Make sure you keep it fresh by changing drinking the contents often.
• Chocolate: Definitely an indulgence but if you’re not a fan of chocolate, at least keep a favourite snack nearby as a treat.
• Fan: A small portable fan or a hand fan can help if you have trouble regulating your body temperature.
• TENS Machine: Many people swear that using a TENS Machine helps with pain. I personally haven’t found relief with one, but everyone is different. Find out if you can rent one through a Medical Supply Store first before buying a unit, so you know if it will help you or not.
• Portable Cane: A foldable cane can be super handy for around the house or outside if you find that sometimes you’re unsteady on your feet. They come in various colours and patterns so you won’t be stuck with “just” basic black if you want something to stand out with.
• Essential Oils: These oils have long been thought to have medicinal purposes and many people swear by their properties. There are several good companies that market these and many more little independent companies to check out. Some carry a full range of products designed to use as a set and some carry individual offerings. Find what works for you.
• Wet Wipes: The portable bath! When you need to freshen up but you’re just not feeling well enough for a proper bath or shower, wet wipes are the miracle bath.
• Dry Shampoo: Like the above, dry shampoo is a spray/shake in, brush out helper for clean fresh hair without having to go through the full and proper wash and dry.
• Favourite Pet or Stuffie: Everyone needs someone to cuddle!
Good days and bad days
I’ve learned to accept that I will always be in pain and that there will be good days and bad days. I’ve learned how to pace myself so when I’m having a good day, I can do the things I enjoy without wearing myself out so I’m not too tired the next day. On the bad days, I listen to meditation music, and use some of my comfort items to feel as good as I can, and I don’t allow myself to feel guilty. I’m taking care of me and that’s all I can do on those days. And that’s not a bad thing at all.
I hope I’ve helped even one person with this post. My motto is “there is always hope”. Thanks for reading!
Thank you to Pamela for taking the time to write this post. It’s always nice to read about other people’s experience with chronic pain and invisible illness and get new tips at the same time.
If you want to read more from Pamela check out her social media links.
As always thank you for reading and feel free to comment like and share.