Hope vs Fear!
For me this is a constant battle to balance the two!
Hope that my illness will improve, that the latest medication will work, that the latest diagnosis will be the key to finally finding out whats causing my immune system to go haywire. Hope that the latest specialist I’m referred to will actually know something about my illness other than the basics, that they’ll actually listen and take into account symptoms not just test results. Hope that they’ll agree to trial different treatment options if the current one isn’t working, if you’ve researched a treatment that they are unaware of that they’ll be open to it, it happens frequently that they won’t as many doctors are at least 17 years behind the latest treatment curve.
Fear that my illness is never going to get any better, that it will continue to get worse as it has done over the past few years, fear that the latest diagnosis will just complicate things and is just another sign of my rapidly deteriorating health, fear that the latest medication won’t work, or that the side effects will be so severe that it negates taking it in the first place. Fear that you’ll have no choice but to take the medication with horrendous side effects, despite the side effects often being worse than the initial illness itself. Fear that the latest medication/supplement/lifestyle change will be labelled as a placebo/nocebo by the medical profession. Fear that a medication that seems to be working will be changed or no longer be available or will be stopped by a doctor despite my protestations.
The lists seem endless some days and whilst some may seem extreme I have experienced all of the above at one time or another throughout my illness.
We’re repeatedly warned about how damaging negative thoughts can be and that we should try and be as positive as we can, but hope can be just as dangerous I’ve found.
So it is important to be pragmatic when starting a new treatment or seeing a new doctor for the first time. For any new treatment I carefully log each day how I’m feeling whilst taking it, so that I can objectively look at all the data and see if symptoms are improving or getting worse, are there any new symptoms, I also log test results, and any things I may have eaten or come in to contact with. Such as the paint fumes during my recent re-decoration of our lounge, I thought my thyroid was rapidly descending into a hyper state, due to the horrendous chest pains, the breathlessness, headaches, etc. As soon as the paint was dry and the fumes gone all of this started to clear up, although it has taken a couple of weeks. Logging all of this data is useful for taking with me to my doctors visit, I rarely visit the doctors without having researched and bullet pointed everything I want to cover as I’ve found if I don’t not only do I forget half of it (thanks brain fog), but its easier for it be ignored when its not all laid out in black and white. I’ve learnt this the hard way unfortunately! And I’m sure my doctor must dread the site of me sometimes with my notes, graphs and books, but it has helped me achieve dosage changes, medication changes and trialling of new medications, so although its a lot of work at the time I definitely wouldn’t change it.
My latest dealings with hope and fear has been thanks to a new medication. It took some convincing for my doctor to agree to prescribe my latest medication, low dose naltrexone (LDN) as its not licensed to treat autoimmune diseases but has been found both anecdotally and in plenty of small studies to be an effective treatment as it was discovered to be an immunomodulator in the 1980’s . As the alternative he was offering was not licensed either for any of my autoimmune illnesses and has a list a mile long of pretty horrendous side effects and only treated the pain and not the immune disfunction which is what this does, and has very little side effects, he finally agreed to trial it first. It has been 6 weeks since I started taking LDN and apart from a few bumps in the road early on it seems to be helping. I say bumps in the road, but they felt like a little more than that at the time! I started to notice a difference within the first day or two but was cautious not to be too optimistic, by the end of the first week the muscle pain, muscle weakness, fatigue and brain fog were noticeably improved. I had more energy and motivation, I could think clearly for the first time in ages and actually do physical stuff without wanting to cry from the pain. This was then followed by two days of feeling like I was an emotional mess, crying for no reason, feeling so low everything seemed pointless. Probably the fall out from overdoing it because I was feeling better than normal and doing more than normal as a consequence. I’d been so careful not to get my hopes up, but it had happened anyway! Thankfully this passed quickly but was then followed by an unexplained sudden severe bought of diarrhoea and sickness (sorry TMI!), to the point I had to delay my travel plans to visit my sister in Marseille. Luckily since then its been fairly good, I’m having to find my new level of what I can and can’t do as I now feel and want to do more, but thats a good thing! I’ve just started to increase my dose little by little to find my ideal dosage, so hopefully there won’t be any further problems but you never know, at least I’ve researched what the likeliest problems could be and am actively monitoring everything.
So far in the last month I’ve managed a trip to Marseille on my own, which might not seem like anything major but travel usually exhausts me, so I try to only travel with others so they can help me out if I hit the wall halfway through! I’ve been on plenty of dog walks, more DIY (it never ends), deep cleaning the house (with a little help, thanks Michelle). And loads of social events, such as my birthday dinner, a halloween party (I even had the energy to make my costume), bonfire night, fake christmas dinner with 15 people, a friends birthday bash, and book club, any one of which would normally put me out of action for days afterwards but apart from some extra aches and pains its been pretty good. Plus a two day first aid course all in French which I organised too, which is a major achievement as the brain fog can make it really hard to speak or understand English most days. Long may it continue!!!
Hope is the only thing that keeps me going some days, but I try not to build it so high that the crash if and when it comes isn’t so crushing. When this does happen and fear takes hold completely, I rely on my friends and family to help drag me out of the funk that usually accompanies it and to help me re-balance the two. Thanks for all the visits, calls and messages when I’ve been feeling rough and for all the fun when I haven’t!