I'm glad I can be of some help and give you some hope. I remember how fearful my parents were watching me decline and become so sick, so I'm glad to give you some reassurance.
Answers to your questions:
- I didn't have any outside help and only had help from my parents and then boyfriend. Mainly because it took so long to get a diagnosis and because it's hard to get governmental assistance here for these types of conditions. Also like Nick I was extremely resistant and quite stubborn. This was a mistake. I think I would have refused help anyway because being in my 20's that loss of independence was terrifying, I was also embarrassed and I just couldn't emotionally accept that I was disabled. My advice to you and Nick is if you can get outside help -please take it. It will reduce some of the burden on you but also means by handing over the reigns to someone else, Nick can focus more on getting himself through this. Please tell Nick that accepting help doesn't mean that he's giving up and doesn't mean he will be stuck like this forever, it's more about acknowledging where he's at and that he can't start healing while he is trying to push through. It's counter productive. He needs to respect this disease and by doing less physically now he will hopefully be able to do more in the future - rest is crucial.
- My motto is to be open and try everything provided it won't injure me or cause more damage to me. Lots of research from valid sources before trying things. The prospect of dealing with die off symptoms was scary because we spend so much time trying to avoid anything that might make us feel physically worse but the reality is - most of us need assistance through treatments to get better. I basically accepted that I would probably feel unwell at times. Recovery from this isn't perfectly linear. Even if I had setbacks I'd focus on the fact that my overall trajectory was still moving towards improvements and healing. This is an extremely slow process but don't give up. Accept that he may try something now and it might not work but be open to revisiting in the future as it might help then. Formulate a plan of attack. I started with killing off the parasite. It made sense to me because how could I start healing when I had something inside me that was wreaking so much havoc? Don't bother with bandaid solutions, you must methodically address the sources. Start slow with some things and full doses with other things. For me personally, getting rid of the parasite required full doses but protect the gut as much as possible with probiotics at the same time. What treatments you guys try and at what dose is completely up to you and your doctors.
- That was a massive struggle. I arranged some Skype sessions after the initial consultation but pretty much in Aus they want to see you face-to-face. I'd encourage Nick to use a wheelchair as an aid when he needs to see doctors. He must take some of the physical burden off himself. I basically laid down in the car. Took frequent rest breaks to get into the doctors office, and my dad helped prop me up. I'd also lay down while I was speaking to doctors. Most could see I was extremely sick and struggling so didn't object. I also made it clear to my parents what I wanted and the questions I had so they could speak for me if need be. Use aids like sunglasses and earplugs to help with the sensitivity to light and sound. Should I have left the house - no, but in my case there was no choice. I pretty much knew I'd feel awful and just tried to accept that I needed to put up with it because I was seeing a person who might help. Tried to space appointments out as much as possible and pep talks from my loved ones would help get me through.
- Minimise stress and keep the environment as calm as possible at all times. Make sure Nick isn't watching/listening to the news or reading negative stories about other sufferers. All this does is add to the despair and hopelessness. If he can watch some TV I'd suggest relaxing documentaries, comedies or even cartoons. Benign things that will distract his brain from focusing on his symptoms for short periods of time. Lots of pacing and routine. Guided healing meditations on YouTube. Using earplugs when sleeping to block out noise if he needs it. Making sure at home that you talk to him about the things he can start doing once he starts getting better (even if only small) and lots of positive self talk. I found when my parents were worried it would worry me more. Adopting a warrior mindset I found that looking at this disease like I was training for a marathon kept me focussed on getting well and helped me to accept that it would take a lot of time. Crying when needing a bit of emotional release and being surrounded by people who understood I have a real physical disease that would just check in with me and simply saying "you're doing the best you can and where you're at is ok" or "I hope you are feeling a bit better soon." Short visits with friends and get them to come to you. Having a pet to snuggle up to. Good nutrition and staying hydrated - regular mealtimes. Read stories of those who've recovered and find commonalities that he can try - researching gave me back a bit of control and helped me feel like I was doing something to help myself.
Also Ann I've regained the 10kg I lost when bed bound - some more positivity for you
Sorry for the essay!! Hope this helps.
