Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!
Diagnoses: Dysautonomia and HEDS (Hypermobility Ehlers Danlos Syndrome)
Age at Diagnoses: 44 and 45
How are you currently treating your conditions?
Medication wise – I am on beta blockers 3 times a day and midodrine. I have also recently started taking sertraline to try to even out my blood pressure issues. I take a sleeping tablet most nights. I also take Vit D, Magnesium, and Vit C daily for my muscle issues and Mobic when I get joint pain that endures. Diet wise I drink salted water every day and have salt on pretty much everything! I do not drink alcohol. I drink decaffeinated coffee and tea since caffeine interferes with my adrenaline issues. I do gentle exercise – I haven’t been able to do cardio despite trying for a period of 6 months. My cardiologist believes my adrenaline issues cause my bp and heart rate to drop, which makes sense in terms of why I feel extremely fatigued after a lap in the pool! High intensity exercise also exacerbated my adrenaline issues making me a lot more jittery generally and prone to adrenaline related symptoms. Since giving up cardio exercise, everything has calmed down a lot.
I’m unable to sit or stand for long periods since my blood pressure drops a lot and I cannot talk for more than an hour either since I get the same reaction. So I have had to limit my work to about 25% of what I managed prior to getting sick and get creative on what I can do. I now spend a lot more time at home because of my lower work capacity and inability to socialize but my body is steadier and I get to spend a lot more time with the people that matter to me! Having a steady body definitely helps with a steady mind – overall I feel calmer than I have in a long time.
Sleep remains an issue for me. Due to my adrenaline issues I am a prolific dreamer (and nightmarer – yes, I see monsters!) and I suffer greatly from additional fatigue if I haven’t slept well which is often. Sleeping is something that is an ongoing battle for me. It helps if my day prior has been calmer – I definitely see a relationship with the quality of my sleep and how busy I’ve been in the run up to it. I also wake up every day with varying degrees of headaches/migraines – sometimes they go, sometimes they don’t but again there is a relationship here with how much I did the previous day.
Having an adrenaline problem makes my condition a little tricky to manage. Adrenaline revs you up to do more but I get payback big time if I overdo. I try to live my life in what I call “the middle zone” so I don’t poke the bear! It isn’t always easy to get it right.
What are the biggest challenges you have faced since your diagnosis?
I think one of the biggest ones has been work. Up until I got sick, I was the major breadwinner. Adjusting to living on a lower wage and finding things that I can physically do has been really challenging. Getting people I work with to understand what I can and can’t do has also been challenging – many a time I’ve become over-committed because someone inadvertently thought I could do it (either because they thought that I used to do these things or they think it’s an easy task). As time has moved on and they’ve seen the impact of those actions, those expectations have changed which is good. I did have an income protection policy that was meant to support us should I find myself in this position but that was withdrawn a year ago and I’ve had to get a lawyer to help fight for it to be reinstated. None of that has helped our financial position. We’ve had to move to a smaller house, move the kids to new schools. The work I now do is ad-hoc and largely freelance – it’s nice work but I earn about a quarter of what I used to bring home and it’s not regular income. We’re surviving but things were meant to have been easier when faced with this sort of predicament – particularly in terms of the planning I did with having an insurance policy as a backstop. Getting sick is never easy, let alone with financial issues laid over the top. It’s been a big adjustment all round.
Socially it’s also been very challenging. People don’t understand the drain that social events take on those with chronic illness and they still want to see you. But it’s not been possible to keep up with the pace of those and, having declined quite a few, the invites slowly stop coming! Which in one way is a good thing but in other ways a bad thing. It comes with the guilt that you can’t see people as much as you’d like. It’s a really hard one to juggle.
What are your favorite tips and tricks for managing everyday tasks?
Rest!! Listen to your body and don’t overload yourself. Take regular breaks and back off doing too much. Know your limits! Mine is working up to 2 hours per day quietly from home or a 1-hour talking meeting/socializing. Any more than that and I have overdone it!
How do you manage to keep facing forward every day?
I think despite everything we’ve gone through as a family over the last 3 years of my illness, we’ve become a lot closer. I am more present at home. Our pace of life is slower and calmer. Which mentally has helped adjust to this new life I now live. I’m lucky in that my medication also helps many of symptoms. This and pacing myself means I only experience the odd day or part of a day where I feel dreadful. I know that I bounce back. I don’t dwell on what I used to be able to do – what good does that do? I focus on what I can do and what the future might hold. I have a few projects on the go that are about finding a different way to work and earn an income. I’m excited by those.
If you could go back to diagnosis day and tell your past self one thing, what would it be?
I would say don’t be persuaded by doctors that your symptoms mean something that is inconceivable to you. For a good 12 months I was told what I had was anxiety and panic disorder and I believed them. I believed everything I had done in the run up to my symptoms appearing was overly stressful and was the reason for my predicament since I was told that this was the reason. It wasn’t. Stress didn’t help but it wasn’t what caused my body to malfunction overnight. A simple visit to some hot outdoor springs did that. If something changes in your body that is hard to explain, I encourage you to look back over the activities you were doing in the run up to your symptoms. If I had done that it would not have taken me 7 months to realize I was significantly heat intolerant and had dysautonomia.
Do you have a blog you would like to share?
Yes my blog is www.thedailymanic.com. I write about how those with chronic illness can live life better. What I write about is also relevant for anyone wanting to slow down and escape the rat race, which effectively is what I’ve had to do to manage this condition I have.
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