Just to say, before I get into the details of what’s a very long post: I admire your love, honesty and compassion. Your partner is truly lucky to have you in his life. It’s hard being a carer, or even watching while someone you love struggles, but your partner undoubtedly needs you more than you need him. Your devotion is a positive thing. I’m sure he’s grateful, and you’re making a difference to someone who really needs you. I don’t doubt his love for you, nor yours for him.
Secondly: this shouldn’t be considered formal medical advice. I’m just offering a summary of what I’ve learned and what you may find helpful. I’m not going to suggest specific drugs, but there are some practical tips that you can do at home which are safe and used by lots of patients.
With ME, your partner is likely to have neurocognitive symptoms. Therefore, it may be unrealistic for him to do even remote freelance work (such work is not easy and requires a significant investment in time and energy just to find your next contract–I know, because I’m self-employed and have been for 14 years). Freelance work can be incredibly stressful. There may be self-esteem issues tied to earning or not, but I think that’s a private thing for you and he to discuss together. If his contribution comes in the form of PIP, or even just his love and companionship, then that may be enough for you and you can reassure him of that. Only you and he can decide what you both need to get out of this situation.
Additionally, not all contributions have to be financial. Your partner may make music or draw pictures. You can encourage those hobbies and skills, which he may find even more rewarding than monetary contributions. Raising awareness, moving others and creating beautiful things are as valuable, if not moreso, than money.
Obviously you need to eat, so if your partner is on PIP and you’re caring for him 30 or more hours a week, you may be entitled to a carer’s allowance. Otherwise, look for local voluntary organisations that can help (Action for ME is setting up a scheme to help patients find volunteers who can help them with caregiving).
I would join a patient organisation or local group. Most welcome carers, and you deserve good health and wellbeing too. If this helps, don’t feel guilty about it. Many patients are happy to see healthy people and loved ones who ‘get’ what we’re going though. It also provides a support network and people you can turn to for advice. ME is very poorly understood, so ME-specific groups will give you more detailed and nuanced help then generic groups.
ME can fluctuate quite a bit, but the key is good pacing. He should try to learn what his limits are and avoid exceeding them, where possible. That should allow him to stabilise and be more consistent in what he can do, which takes some of the frustration out of this illness.
A Fitbit may be helpful, because you can watch his heart-rate (guidelines suggest he stay within 40-60% of his maximum, age-based heart-rate). You calculate maximum predicted heart rate in men as: (220 - age). You multiply this by 0.4 and 0.6 to give you the upper and lower range. More severe patients will be closer to the bottom, while milder patients will be closer to the upper limit. If you monitor this, you’ll get a good sense of which activities and what heart-rates precipitate a crash, and thereby hopefully avoid the worst.
The NHS/NICE guidelines suggest you don’t exceed 75% for safety reasons, though it may take some time to figure out what his safe range is. More info on pacing with a heart-rate monitor here: Pacing by Numbers: Using Your Heart Rate To Stay Inside the Energy Envelope | ME/CFS & Fibromyalgia Self-Help
In more severe patients, pacing is still really difficult, because eating and daily energy expenditure can sometimes be enough to trigger post-exertional malaise. All you can do is help him avoid deterioration in that case. If he has migraine-like symptoms (such as sensitivities to light and sound), limiting these stimuli somewhat might reduce his energy burden and help him feel more comfortable.
A good rule I learned was to use only 60-80% of the energy you think you have, so that you can build up a ‘credit’ in your energy bank account. In time, that means he may have some days where he can do things he enjoys, like going out or having friends over. It does make all the difference.
Another practice is called ‘switching’. It’s related to pacing, but involves usually different muscle groups and senses. So if he listens to music for 30 minutes (sound/hearing), he does something like reading afterwards (sight). Try to break the day up with adequate rest periods, which should be relatively quiet. TV and the computer can be quite intense, cognitively speaking, so things like the radio, audiobooks or reading are preferable. I try to limit TV and screen time where possible.
Once he understands his limits, it’s possible for him to slowly improve or maintain a stable level of function, which should make everything easier. The worst part of this illness is how unpredictable it is before you figure these limits out. Only about 5-7% of patients completely recover, but about a third improve somewhat (some quite a bit), another third remains stable but doesn’t get worse, and a third gets worse (usually through trying to ignore their symptoms and pushing through).
If he finds himself improving, something like the Pomodoro Technique can help with productivity (you work for 25 minutes, take a 5-10 minute break, then work for another 25 minutes). More info: Pomodoro Technique - Wikipedia. The trick is not to rush into doing too much, too soon.
Your partner might also want to consider treatments for sleep and pain, as fixing these issues alleviates some of the fatigue (which is usually cumulative–gut issues, pain, sleep, sensory overstimulation, etc, all make it worse). The idea is to take just enough to reduce symptoms without feeling groggy for more than about 30 minutes after waking up. Sleep hygiene works for some, but because the autonomic nervous system may be disrupted in ME, some people can’t achieve proper sleep without help.
It sounds like you’re dealing with his gut issues, which is positive. Some of the medications for sleep and pain also help with gut problems. Some patients also report blood sugar issues and insulin resistance. This can be addressed by switching to complex carbohydrates (starches) rather than simple ones (sugars). Some patients do keto, which was developed for epilepsy in children, but that’s hard to do if he’s moderate to severe, or has a restricted diet anyway.
Good sources of information are the ME Association, #MEAction, Stonebird and the 25% Group (the latter two for severe patients). You can join a forum like Science 4 ME if you’re interested in learning more about the emerging science of ME, or if you want honest advice on what to try (people can’t offer medical advice, but they can talk about their own experiences, and many on that forum understand the science really, really well.)
Don’t let anyone tell you he’s lazy or making it up. Don’t let anyone tell you what is or isn’t worth it for you. Only you can know what your love gives you, and you don’t need to explain it to your parents or anyone else. Here’s a song about loving someone despite the views of others which I always love (it’s actually about homophobic laws in America keeping people apart, but I think it’s apt in this case too): Tracy Chapman For My Lover (Lyrics in description) - YouTube
