Samantha Moss

@samantha-moss | contributor
Super Contributor
Sam retired early, from a successful Executive Management Career in financial services, due to chronic disease. She has a rare disabling bone disease, Rheumatoid Arthritis and a permanent colostomy. “When health gets complex, I’ve come to realise it is really important to find others who are also battling multiple issues, to share the never-ending complexities that arise”. As Sam’s disabilities progressed she started a blog called, My Medical Musings. She also set up an online support forum for anyone wanting the hand of friendship as they journey an often lonely and difficult path living with the effects of chronic disease. “Both my blog, My Medical Musings and online support group, Medical Musings with Friends, are a place to laugh, cry, share and vent together”. Sam is a member of the Chronic Illness Bloggers Network and she is passionate about promoting and supporting other chronic illness bloggers. You can follow more of Sam’s story at her blog "My Medical Musings" https://mymedmusings.com/
Samantha Moss

Coping With Changes and Loss With Chronic Illness

When living with chronic illness and chronic pain, life may need a level of certainty. To a large degree, we may be able to create workable daily routines, manage our medications and medical appointments, and keep life ticking along so we maintain our equilibrium as much as possible. With that said, I actually love change. I even worked as a change management consultant for large organizations, and I was in my element in that role. Change doesn’t faze me. I’m trained to find solutions. I know and believe change is an opportunity — a chance to grow, develop, and learn. Given my past, you might think I would cope well with my ostomy appliance being discontinued or my mobile podiatrist no longer visiting my suburb, or my cleaner no longer being able to clean my home. Yes, it’s all happening at once. That’s life, though. Change can all come at once, and somehow, we may need to be equipped to deal with it — on top of managing our daily chronic illness challenges. The “Small” Challenges I have used my ostomy product since my stoma was formed just over eight years ago. It works perfectly for me. I love it. I’ve never had an issue with it. It is my security blanket. Having a stoma is a positive thing for me. My life before I got it was hard. My bowel was completely non-functioning due to a severe rectal prolapse. Just because I’m happy having a stoma doesn’t mean it’s easy, though. Having a stoma can create its own set of challenges. It may take a while to feel confident with it, and because I also have a rare, debilitating bone disease, I have a whole range of life-changing complexities to deal with. So seeing the words “Your product has been discontinued ” with regards to my ostomy product is beyond disconcerting. To be completely honest, it’s slightly terrifying. There are many excellent products available through numerous ostomy companies. Sounds good, doesn’t it? However, the array of choices available presents its own set of issues. To find the right product, I need to sample as many as possible. The process is exhausting — especially when I need to keep my regular routine in place to help manage my pain. I’ll get there, I’ll work through the process, and I’ll arrive at the point of accepting a new product. I’m sure before long, whichever ostomy appliance I choose will become my new “security blanket.” As I was contemplating my dilemma, I found myself saying, “ Oh well. Nothing lasts forever. ” Knowing Nothing Lasts Forever Change requires acceptance. Remembering that “nothing lasts forever” actually helped me to begin to focus my thoughts in a more positive way. I began to look beyond my current circumstances and think about the future. The one inevitable thing in life is change. My beautiful dad passed away a year ago. I couldn’t control it. His passing was inevitable. All I can do now is find ways to cope with the grief, remember the good times, and find a way to live again without him in my life. It’s a completely new chapter of my life. The whole cycle of life points to the fact that nothing lasts forever. Still, sometimes it’s the small changes in life that can cause us to crumble and feel as if everything is all too much. I think when this happens, it’s often because there are larger life-changing issues at play. Perhaps we are grappling with financial issues, relationship issues, the loss of a loved one, or health struggles. The list of things that worry us — and also present the need to make changes in our lives — are often complex and can eat away at us bit by bit if we don’t address them. Addressing the Life Changes How can we deal with the unexpected changes in our lives? As with almost anything, accepting change is a process. I like to keep the process simple — especially when I’m dealing with complex situations. My approach to any life-changing event is to start making time to stop and think. It’s often crucial to be deliberate and focused when dealing with change. Here’s the step-by-step process I follow. I hope it helps you find a way to cope with your own challenges with change: Find a quiet place to sit with a nice cuppa or other favorite drink. Have a notebook or your phone handy to jot down your thoughts. Ask yourself why this small change is making you feel so stressed. List other life events that are concerning you. It’s important to acknowledge these things now — even though you may be focused on “small” changes now. Read carefully through the concern list you’ve created. Ask yourself if you can do anything to start addressing some of the more “major” changes soon. Jot down some ideas next to each item. This may help you calm your mind and feel a sense of peace. You may realize you can maybe do something about your life changes. Create an action plan with a timeline — starting with your smaller struggles. Plans may take the uncertainty out of your situation. This can reduce your stress levels and help you think more clearly about the road ahead. As you think about the changes you’re facing, deliberately include in your action plan any positives that may come as a result of the changes. Even when grieving the loss of a loved one, a relationship breakdown, or a job loss, you may be able to find some peace. Sometimes we may feel we can’t give ourselves permission to be happy about some of the beneficial outcomes a major life change might bring. However, finding the positives may help us move forward. As you complete your action plan for the smaller challenges you’ve been struggling with, ask yourself if they are as “bad” as you first thought — especially when compared to the life changes on your “major challenges” list. You may just be overwhelmed by the larger events happening in your life I find that once I’ve used this process and been honest with myself, I realize that there are underlying issues causing me to feel overwhelmed when little things go haywire. I know I need to focus my energy on resolving the major issues in my life as soon as possible. I also remember I need to deal with the smaller issues now and reduce my stress levels. Once these are out of the way, I often have the emotional energy to address the more major stresses in my life. Resolving the Major Issues I’m not going to suggest resolving a major life changing issue is easy. However, I do know pushing it constantly to the side is not helpful, and it can cause health symptoms to be more intense. Stress increases pain. When living with chronic disease, having a peaceful life can make life easier. The process of listing your major life-changing events and jotting down ideas to begin to resolve them is a great starting point for ultimately managing the change process and relieving some stress. It often puts you in the driver’s seat and begins to give you a sense of control — particularly in a situation that may make you feel powerless. You may need assistance from others to help fully resolve your major challenges, but even acknowledging this and identifying who could help is a great starting point. At the end of the day, if little things are feeling like huge changes, it’s likely because more major issues are at play. Acknowledging this may help us “not sweat the small stuff” quite as much. Perspective is a wonderful tool to use when managing change. How I’m Practicing My Own Advice I’m going to take my own advice and acknowledge I’m deeply grieving the death of a loved one: my precious dad. As a result, the last thing I feel like dealing with is a change to my ostomy product and finding a new podiatrist and a new cleaner. However, in the big scheme of things, finding a new ostomy product and new people to help me is not a big deal, and I will find the right solution for my needs. A new chapter of my life is beginning — life without my dad and with a new care team. I’m even starting a new online volunteer role with a church I have been following on YouTube. Change can be exciting when new ventures present themselves. I’m going to keep reminding myself “nothing lasts forever” to cope with the changes. This isn’t entirely true, though. According to Saint Paul, there are three things that will last forever. These are three incredibly beautiful things to hold onto — no matter how much change bombards our lives. “Three things will last forever: faith, hope, and love-and the greatest of these is love.” 1 Corinthians 13:13 I’ll always miss my dad, but I’m so grateful to have had him in my life. He showed me true love, and that will help me through all of the changes in my life.

Community Voices

My Podcast "Virtual Book Tour"

<p>My Podcast "Virtual Book Tour"</p>
Community Voices

Kissimmee Florida area, is there anyone here that has Osteogenesis Imperfecta? I feel so alone with this disease. I’ve had 102 fractures to date.

<p>Kissimmee Florida area, is there anyone here that has <a href="https://themighty.com/topic/osteogenesis-imperfecta-brittle-bone-disease/?label=Osteogenesis Imperfecta" class="tm-embed-link  tm-autolink health-map" data-id="5b23cea600553f33fe99965f" data-name="Osteogenesis Imperfecta" title="Osteogenesis Imperfecta" target="_blank">Osteogenesis Imperfecta</a>? I feel so alone with this disease. I’ve had 102 fractures to date.</p>
7 people are talking about this
Samantha Moss

Not Giving Up Hope and Being Independent in Life With Chronic Illness

Chronic illness may take many things from us. Some aspects of our diseases we can’t control, but there are sometimes others we need to find a way to overcome. Over the past six months, I have felt like my disease has been winning. I’ve felt like a prisoner in a body determined to weaken me. I’ve even woken up in the middle of the night, struggling to get my breath as pain enveloped my body and extremely strong pain medication induced numerous, unwelcome side effects. Living with chronic illness has been as much a mental battle as it has been a physical battle. Late last year, I was constantly in bed for over three months — unable to sit, stand or walk. It was — and still is — the scariest episode of my bone disease to date. When I was in the hospital during the acute stage of my disease deterioration, specialists were not hopeful about seeing improvements in a hurry. They even indicated I would need to be transferred to respite care rather than a rehabilitation unit — as I would not achieve the basic improvements physically to be eligible for the rehab program. Their concern did little to instill hope in me. I can’t give up. The thought of being placed in a nursing home filled me with terror. I wasn’t ready for this path. I’m still not ready. I need to keep fighting while I still have a fight left in me. I remember lying flat on the hospital bed, staring at the ceiling, and praying for an answer. I needed hope, and I needed encouragement, but no one could give it to me. I had to find it. My body needed to give me a sign it wasn’t giving up on me entirely. It certainly felt like I was moving towards the end of the road. Did I have a choice? Could I turn this situation around somehow? I could give in and give up, or I could find a way to break free from the bars surrounding my hospital bed. I decided to play some music — a cross-section of my favorite popular songs and some inspirational gospel music. The familiar melodies began to calm both my mind and my soul. I began to visualize myself walking, moving, sitting upright, and going home. I began to think back to how I moved prior to this devastating acute disease episode. With widespread pathological fractures throughout my body, I couldn’t move much before this incident, but I could get off the bed and grab my walker or crutches. I could move one leg in front of the other and sit upright. I began to visualize doing this again — moving in a way my body was accustomed to, not in a perfect way but in an independent way. I decided I couldn’t give up. I wasn’t ready to give up. I had to find a way to prove my medical team wrong. I had to find a way to convince my physiotherapist to allow me to try to move my body my way, even if it broke all of the rules. Please let me try. The next morning, my physiotherapist came into my room with none of the fancy equipment he had been trying to use to help me stand and walk. I was actually relieved to see him free of “party tricks,” and before he had a chance to speak, I launched into my prepared speech. “I want to try quickly getting off the bed, not stopping to sit but instead lifting myself upright onto my walker. I just feel like I can do it with no assistance. I need to try. Please let me try.“ I couldn’t believe my ears. He immediately responded with the words I had hoped to hear. “Yes, go for it!” No arguments and no other ideas — just “yes.” He said he’d been thinking overnight and felt we should try something like this. Yes! My prayers were being answered. Now all I needed to do was execute my plan. I’d say I had nothing to lose, but I really had everything to lose. I closed my eyes and took some deep breaths. I needed a moment to calm myself and give this everything. I counted to three and launched into action. Oh my goodness! It worked! I was upright, holding onto my walker. I was standing. My physio was clapping and jumping for joy. I had tears streaming down my face from pure relief. I had reignited hope. I knew I had a long road ahead, but some improvement was possible. I didn’t feel like everything was useless. This wonderful moment was repeated in various ways throughout my hospital stay, and I refused to let go of hope. I refused to give up on “impossible” dreams. You might think coming home after six weeks of being in the hospital would instill further hope in me, but you wouldn’t quite be right. For the most part, coming home gave me hope until I began to achieve more and more goals. You might think this sounds strange, but the more I achieved, the more I felt the loss of what I wasn’t able to achieve. Yes, I could eventually shower instead of take bed baths — but not without help and not without excruciating pain. Yes, I could putter around at home, but I couldn’t help with household tasks. Yes, I could get dressed, but doing my hair and makeup regularly just took too much out of me. The more I thought about what I couldn’t achieve, the more I felt a huge hole of loss and hopelessness. The more I had caregivers visit daily, the more “disabled” I felt. They did things for me rather than me finding ways to do the tasks I needed to do. They took up so many hours in my day that I lost time to do my pain management therapy activities like writing, relaxing with a good movie, and administering my support forum. They were amazing, genuinely caring people, and they were much-needed when I was in my most critical period, but I had improved enough to feel like I needed to unclip my wings. As my bedroom walls closed in on me in a similar way to the hospital room, I knew I was in trouble. I could feel all hope slipping away again. I couldn’t breathe. My pain was excruciating, and I felt as if my disease was flowing through my veins and trying to kill me. I felt so nauseated and so exhausted. I was exhausted from pain and caregivers, rehabilitation workers, and cleaners all visiting our home every day — leaving both my husband and I with little time to recover from the trauma of the past few months. We had no time to relax together or watch our favorite TV shows. I needed to do something about this new challenge. My husband and I needed to create our own routine and move at our own pace, to recharge and digest the events of the past months. The next day, I woke up feeling slightly better. I had completely rested the previous day because I felt so ill. It worked. It was clearly what I needed, so feeling encouraged, I began to make changes. These changes ensured my chronic disease wouldn’t be able to completely overwhelm and control me anymore. Over breakfast, I sent numerous emails advising relevant agencies of my decision. Each email gave me a jolt of enthusiasm and hope. There was still a long road ahead for me, but I felt strong enough not to need outside assistance or personal care. We didn’t need regular caregivers visiting, which freed up three days per week. Physiotherapists, occupational therapists, cleaners, and dieticians still continue to visit, and they are more than enough at this stage. I can still have caregivers on an ad hoc basis. I have my husband as my full-time caregiver, and together we make a good team in managing my daily needs. I’m breathing again — breathing a sigh of relief. It’s good to set boundaries and work out what’s best for our situation. I can now find time to relax and watch my favorite TV shows. As I watched one day, my ears perked up when during an intense scene, one of the actors said, “You’re only a prisoner when you lose hope.” Those words resonated with me so much. My disease tried to take me prisoner, and as I began to lose hope, it nearly won. I need to remind myself of my own message to others, that chronic illness can be a part of our lives but not necessarily all of our lives. I know my disease is going to be difficult to navigate. I know I may have to accept a “new normal” over and over again. I also know I need to be proactive. I need to ensure I never stop finding ways to safely break free from my disease. I need to hold on to hope.

Community Voices

My Story

<p>My Story</p>
2 people are talking about this
Community Voices

My Story

<p>My Story</p>
2 people are talking about this
Samantha Moss

My Non-Negotiable Chronic Illness Rule

I love life’s little challenges. I love problem solving and turning obstacles into opportunities. I love putting positive spins on what would otherwise be a very negative situation. I’ve done that all my life, both in my personal life and my working life. So, chronic illness really wasn’t going to change that about me. It’s just another of life’s challenges. Right? Well, sort of right! It’s probably one of the more difficult challenges life has thrown at me, and it often requires strategies I wouldn’t normally employ. When I can stick to what I call my Chronic Illness Management Plan, life has a stable flow, despite the unpredictable nature of my disease. The flow consists of routine daily activities, rest, activities, rest. Pretty simple. It works for me. It’s very limited physically, and it’s a home-bound routine, but as I’ve written about many times, I’m at peace with it and I’ve accepted this new way of life. Sometimes it doesn’t matter how much we try and pace activity and rest, there will be periods of time when circumstances are outside of our control. I’ve had a fortnight of one thing after another coming my way. These things weren’t planned and couldn’t be avoided. It was like looking at an avalanche moving with full force towards me, knowing I needed to run in the opposite direction but being stuck with legs that wouldn’t move fast enough. So when things are really outside of your control you have to deal with them as best you can. You have to face it and try to move through it while constantly hoping and praying a crisis doesn’t eventuate. A crisis that could quite likely land you in hospital. My avalanche included extra necessary medical appointments which resulted in extra tests and scans over a number of days. All were taxing on me physically and all greatly impacted my “normal” daily schedule I need to follow to cope with my pain levels and disease symptoms. The problem with chronic disease is you often can’t just catchup after a glitch in your routine. Believe me I’ve tried. I’ve often thought that one day of complete rest will make all the difference. One day of rest when chronically ill doesn’t really do much at all. At some point, once the avalanche of unplanned and unavoidable activities are over, you have to fully assess the damage. I’m my own worst enemy when it comes to doing this. I’ve accepted my daily rest periods are now part of my life, but I hate having to stop completely. So my initial plan was to reinstate my “Chronic Illness Management Plan” and return to my normal daily routine. Ha… well, that clearly wasn’t going to work. So my next step was to try increasing the length of my rest periods for a couple of days. No, that didn’t work either. It was time to draw the line in the sand. Time to wave the white flag and retreat. I had some other appointments looming as a new week approached, and I could feel my avalanche crisis beginning to gain further momentum. I began juggling my daily schedule to wake up later, go to bed earlier, increase pain medication, put all household tasks on hold. All were Band-aid solutions and not the strategy I needed to employ to rectify my situation and get back to my base disease level of operandi. Out of the blue I received two phone calls advising that appointments needed to be re-scheduled for various reasons. What a relief. I’m sure I sounded way too happy on the phone when one caller told me she needed to cancel due to a migraine. I felt so bad about that afterwards. Oops! As I sat in my armchair, letting the fact that I now had the gift of time waft over me, it became clear what I needed to do. I needed to cancel the day. Do nothing, plan nothing, just withdraw. There is always the temptation when appointments are cancelled to fill the time with other tasks. I couldn’t afford to do that even though my head was full of great ideas. My body was screaming at me. I had to listen to it. Once I committed to cancelling the day and resting, really resting, I realized this was going to be a longer term strategy. I needed more than one day. Two weeks of damage could not be undone in one day. I had four days ahead with no medical appointments. My window of opportunity was there. I could ignore it or be sensible. I chose to be sensible. Well, I like to think I chose, but in actual fact I really had no choice. Chronic Illness has one non negotiable rule: look after yourself. So if life has gotten too busy and your disease is flaring out of control, when all else fails — and if it’s possible — cancel the day. Cancel a few days. Take the time you need to recover and get back on track. Most importantly, please don’t feel guilty about cancelling the day. It’s not your fault. You are absolutely doing the right thing.

Samantha Moss

Turning the Rare Disease Stones on My Back Into Balloons

I was listening to a sermon on Sunday morning, well only half-listening really, but the preacher made an interesting comment, causing me to listen a little more intently than I had been. (Note to self: Having church at home requires discipline and means not having your phone in your hand, reading posts from members on your FB support forum!) He said something like, “ We need to turn the stones on our backs into balloons.” The image for me was a powerful one. I immediately thought of the combination of chronic illness and my idiopathic rare disease as being a huge stone on my back and shoulders. I visualized not just one stone but a cluster of stones, with each stone representing a different diagnosed disease or a set of symptoms. As I imagined those stones, I could feel their heaviness. I could feel the weight of all I’ve lost as a result of my declined health and disability. I could see how stones had been added with each health crisis over the years. In my mind’s eye, these stones were grey in color. They were of no particular shape, slightly rugged, but mostly smooth. I think the smoothness was my attempt to accept them and make them easier to carry. The more I looked at the image of those stones on my back, the more I knew they didn’t belong there. It’s not how I want to live my life. I don’t want to feel only the heaviness of the stones. I want to find a way to release them, to breathe, to live the best life possible. I want to turn those stones into balloons! Get These Stones Off Me Now! I suddenly felt a sense of urgency to take my focus away from the grey heavy stones. I needed to replace them and I had been given the key. “Turn the stones on your back into balloons.” As my mind turned to the image of balloons, I saw color. Red, white, pink, yellow, blue. As I focused further on the balloons, the colors of the rainbow appeared. The colors of hope for a brighter future. As I thought about removing the stones from my back and replacing them with these balloons, I began to feel lighter, happier and I had a sense of freedom. Balloons allowed me to fly, despite my disease. A sense of peace replaced a sense of burden. I realized as I focused on the balloons in my mind, I was having a physical response. I was smiling from ear to ear. I was literally feeling relief. Balloons Versus Stones Let’s face it, adding stones happens naturally. It’s hard not to feel burdened by chronic illness and rare disease. They control so much of our lives, day after day. Replacing those stones that have made a nice home for themselves on our backs requires commitment and determination. It’s so worth it, though. So what do the balloons represent? It’s likely different for all of us, but here are some of the things on my balloon list: • A mindset to focus on “what is,” not  “what if” • Regular drives in the country • Shopping trips in my new wheelchair • Cafe lunch dates with my husband • Morning or afternoon visits from friends • A new home fully appropriate for my disabilities • A local holiday for a few nights My balloon list is colorful and allows me to fly. In my mind, I have rolled those stones away so there is no way the balloons can burst. Our burdens are real. Our diseases can be cruel. There is no denying it. The more we allow our thoughts to stay focused on our diseases, the heavier and bigger the stones will become. The image of replacing the weight of chronic illness with something light, like balloons, can be such a useful tool when you are feeling the sheer weight of your situation. It’s not to trivialize the seriousness of your health issue, it’s simply to help you cope as you live with it. Ultimately as you turn the stones on your back into balloons, you will hopefully feel lighter, a more positive outlook may return, and an inner joy you felt incapable of feeling again may begin to flicker. It’s Rare Disease Day on February 28. Let’s use this day to not only raise awareness, but also to encourage each other to turn our stones into balloons.

Samantha Moss

Making the Most of Spending Holidays At Home With Rare Disease

You know the feeling of needing a holiday. Time away from your own life realities, if even for a few days. You are probably exhausted from work, life events, health issues, end of year fatigue and numerous other reasons. My list of reasons for needing a holiday is not short! A Year to Forget 2021 started well. My health had settled to some degree. I could potter with crutches and was enjoying writing, managing and growing my online support forum and committed to my online volunteer work with Arthritis Queensland, an Australian nonprofit organization. I even had exciting news…. I signed a contract with a New York publisher to turn my blog into a book! My memoir “My Medical Musings” is set to be published in early 2022. My husband and I are very excited. It’s always been a lifelong dream of mine to write a book, so it’s very surreal. Life is full of ups and downs, as they say, and bad news often follows good. Sadly on the 5th of April, my Dad passed away while in hospital. My bond with my Dad and our mutual support of each other over the years was so special, and while I’m grateful to know he is at peace in heaven, the pain and grief of losing him has been hard. My rare disease began to take a turn for the worse in March, so my husband and I were unable to make the trip to his hometown to attend his funeral, making the grieving process even harder. At this stage we didn’t even realize exactly how much my disease was progressing. In early September I woke to find I couldn’t walk, sit or stand. My left side lumbar spine had basically collapsed with severe spinal stenosis, compressing a bundle of nerves at L4/L5 and I also had a sacral fracture showing on an MRI, on the left. My left leg was like a block of wood and wouldn’t move at all. I spent five weeks in hospital, bed bound, aside from one physiotherapy session a day. I could only sit up at a 30 degree angle and even then I could only hold this position for two minutes. I eventually managed to convince my specialists to let me go home to continue rehab through the home hospital program, alongside help from a care organization. So on the 14th October I was finally brought home via ambulance. Being home means full on care and a lot of work for my husband, who is exhausted. We are so grateful for the carers, nurses, physios, OT, cleaners etc, all supporting us at home. I’ve even found a mobile dentist! We are seeing some progress. After seven weeks of bed baths I can now stand in the shower with assistance for four minutes. I can sit upright for five minutes and can walk a little with my walker around the house. I need full spinal fusion surgery, but the risks of infection and complications due to my bones being so diseased, make this a non-option. It’s All a Little Overwhelming All of the above has left my husband and I feeling so depleted and exhausted. We need to take time out to digest all that’s happened, all the life changes we have made and others we need to make in the New Year. We need a holiday. Problem is the only way I can be transported from home is via an ambulance. I also wouldn’t be able to function away from home aside from in hospital or a rehab centre. This situation required us to think outside the box to come up with a holiday plan. There’s No Place Like Home Why not holiday at home? Given my disabilities I wouldn’t be able to do much other than stay in the holiday apartment if we did go away. Our own home has every creature comfort we could need and is set up to assist me with my disabilities. It really is my very own B & B. Medical expenses and being pensioners doesn’t leave us with any spare spending money, so a holiday at home ticks the budget box perfectly. All we have to do is commit to a holiday at home. We need to decide what this will look like and what changes we need to make to achieve it. I love a plan and I really love a planning session, so this is part of the fun and anticipation for me. My Holiday at Home Plan • Decide how long the holiday will last: we’ve decided the month of December. • Cancel all unnecessary appointments for the month : everything except the cleaner and GP telephone appointment for prescription repeats has been cancelled. • Let your close circle of supporters know your plan: we might decide to text every few days to let them know we’re OK. If your situation is like mine, remember they’ve been worried about you given the severity of your health, so a contact plan is important for everyone’s peace of mind. • Plan activities: reading, watching Christmas movies or test cricket, writing as the mood takes me, my husband will enjoy a walk or time out to take photos, we can play games, enjoy good food and some holiday treats plus the odd afternoon snooze. • Don’t plan anything: It doesn’t really matter what we do. If we have a plan and it works, great, if it doesn’t, it doesn’t matter. The whole idea is to dial down the stress and focus on anything relaxing and non-health related. • Set up your own B & B: this can be the fun preparation part. Put fresh linen on your bed. Perhaps the budget may stretch to a new duvet cover or bedspread. Add some extra cushions, a throw, a breakfast tray, perhaps a new picture on the wall. Before you know it your bedroom could be a new B & B room, all set for your holiday at home escape. I’ll still be in extreme pain, I’ll still be severely disabled, but I would be like this no matter my location. A holiday at home won’t miraculously change our circumstances. It can change our mindset though, which is key. It will take us away from a life focused on rehab and recovery. We need to step out of the medical world as far as possible, just for a few weeks. To do so will likely help with my recovery anyway. So if you’re like me, exhausted and a little fed up with the medical merry-go-round you’ve been treading, considering shaking things up a little. Give yourself permission to relax, to reclaim a little normalcy. Be sensible and keep in place anything crucial to support your health needs, but remove any non-essentials for a few days or weeks. A holiday at home has some huge advantages. For us they include: • The comfort of our own bed; • No packing or unpacking required; • All my mobility aids on hand; • Our comfortable lounge chairs/recliner; • Our own TV, wireless network, Netflix etc… no signing in required; • It’s Christmas and our decorations are in place for us to enjoy; • We choose the food for our fridge and pantry…. all dietary requirements looked after. I’m sure your holiday at home plan will have its own unique and important advantages. The point is trying to go away, when living with chronic illness, can be incredibly stressful. A holiday at home could be the perfect solution. Have a think about it. Have fun planning it and above all, if life is a little overwhelming and you’re exhausted, don’t think for too long before taking action and booking into your very own, “at home,” bed and breakfast! Happy Holidays! Sam xx

Samantha Moss

Making the Most of Spending Holidays At Home With Rare Disease

You know the feeling of needing a holiday. Time away from your own life realities, if even for a few days. You are probably exhausted from work, life events, health issues, end of year fatigue and numerous other reasons. My list of reasons for needing a holiday is not short! A Year to Forget 2021 started well. My health had settled to some degree. I could potter with crutches and was enjoying writing, managing and growing my online support forum and committed to my online volunteer work with Arthritis Queensland, an Australian nonprofit organization. I even had exciting news…. I signed a contract with a New York publisher to turn my blog into a book! My memoir “My Medical Musings” is set to be published in early 2022. My husband and I are very excited. It’s always been a lifelong dream of mine to write a book, so it’s very surreal. Life is full of ups and downs, as they say, and bad news often follows good. Sadly on the 5th of April, my Dad passed away while in hospital. My bond with my Dad and our mutual support of each other over the years was so special, and while I’m grateful to know he is at peace in heaven, the pain and grief of losing him has been hard. My rare disease began to take a turn for the worse in March, so my husband and I were unable to make the trip to his hometown to attend his funeral, making the grieving process even harder. At this stage we didn’t even realize exactly how much my disease was progressing. In early September I woke to find I couldn’t walk, sit or stand. My left side lumbar spine had basically collapsed with severe spinal stenosis, compressing a bundle of nerves at L4/L5 and I also had a sacral fracture showing on an MRI, on the left. My left leg was like a block of wood and wouldn’t move at all. I spent five weeks in hospital, bed bound, aside from one physiotherapy session a day. I could only sit up at a 30 degree angle and even then I could only hold this position for two minutes. I eventually managed to convince my specialists to let me go home to continue rehab through the home hospital program, alongside help from a care organization. So on the 14th October I was finally brought home via ambulance. Being home means full on care and a lot of work for my husband, who is exhausted. We are so grateful for the carers, nurses, physios, OT, cleaners etc, all supporting us at home. I’ve even found a mobile dentist! We are seeing some progress. After seven weeks of bed baths I can now stand in the shower with assistance for four minutes. I can sit upright for five minutes and can walk a little with my walker around the house. I need full spinal fusion surgery, but the risks of infection and complications due to my bones being so diseased, make this a non-option. It’s All a Little Overwhelming All of the above has left my husband and I feeling so depleted and exhausted. We need to take time out to digest all that’s happened, all the life changes we have made and others we need to make in the New Year. We need a holiday. Problem is the only way I can be transported from home is via an ambulance. I also wouldn’t be able to function away from home aside from in hospital or a rehab centre. This situation required us to think outside the box to come up with a holiday plan. There’s No Place Like Home Why not holiday at home? Given my disabilities I wouldn’t be able to do much other than stay in the holiday apartment if we did go away. Our own home has every creature comfort we could need and is set up to assist me with my disabilities. It really is my very own B & B. Medical expenses and being pensioners doesn’t leave us with any spare spending money, so a holiday at home ticks the budget box perfectly. All we have to do is commit to a holiday at home. We need to decide what this will look like and what changes we need to make to achieve it. I love a plan and I really love a planning session, so this is part of the fun and anticipation for me. My Holiday at Home Plan • Decide how long the holiday will last: we’ve decided the month of December. • Cancel all unnecessary appointments for the month : everything except the cleaner and GP telephone appointment for prescription repeats has been cancelled. • Let your close circle of supporters know your plan: we might decide to text every few days to let them know we’re OK. If your situation is like mine, remember they’ve been worried about you given the severity of your health, so a contact plan is important for everyone’s peace of mind. • Plan activities: reading, watching Christmas movies or test cricket, writing as the mood takes me, my husband will enjoy a walk or time out to take photos, we can play games, enjoy good food and some holiday treats plus the odd afternoon snooze. • Don’t plan anything: It doesn’t really matter what we do. If we have a plan and it works, great, if it doesn’t, it doesn’t matter. The whole idea is to dial down the stress and focus on anything relaxing and non-health related. • Set up your own B & B: this can be the fun preparation part. Put fresh linen on your bed. Perhaps the budget may stretch to a new duvet cover or bedspread. Add some extra cushions, a throw, a breakfast tray, perhaps a new picture on the wall. Before you know it your bedroom could be a new B & B room, all set for your holiday at home escape. I’ll still be in extreme pain, I’ll still be severely disabled, but I would be like this no matter my location. A holiday at home won’t miraculously change our circumstances. It can change our mindset though, which is key. It will take us away from a life focused on rehab and recovery. We need to step out of the medical world as far as possible, just for a few weeks. To do so will likely help with my recovery anyway. So if you’re like me, exhausted and a little fed up with the medical merry-go-round you’ve been treading, considering shaking things up a little. Give yourself permission to relax, to reclaim a little normalcy. Be sensible and keep in place anything crucial to support your health needs, but remove any non-essentials for a few days or weeks. A holiday at home has some huge advantages. For us they include: • The comfort of our own bed; • No packing or unpacking required; • All my mobility aids on hand; • Our comfortable lounge chairs/recliner; • Our own TV, wireless network, Netflix etc… no signing in required; • It’s Christmas and our decorations are in place for us to enjoy; • We choose the food for our fridge and pantry…. all dietary requirements looked after. I’m sure your holiday at home plan will have its own unique and important advantages. The point is trying to go away, when living with chronic illness, can be incredibly stressful. A holiday at home could be the perfect solution. Have a think about it. Have fun planning it and above all, if life is a little overwhelming and you’re exhausted, don’t think for too long before taking action and booking into your very own, “at home,” bed and breakfast! Happy Holidays! Sam xx