Hi!

I have been reading several posts about juggling stress, jobs etc. etc. with PIDD. I thought that perhaps some of you might find this interesting/useful. I wrote it on another PIDD forum that I am a member of, in response to being sidelined yet again, this time by a new diagnosis, Hashimoto's (very common in folks with CVID). Anyways here is my playbook for managing my illness and living my life and of course I am always fine-tuning, but it seems to be working for me. In particular, for the lady with the ill mother whose care is pushing her to her limits, and who is feeling badly about potentially moving her into an assisted living situation, I hope some of this will resonate and make you feel better about your line of reasoning. Remember, in an airplane they ask you to put on your own oxygen mask before putting one on your children, because if you can't help yourself you are of no use to anyone else either.

Have a good day everyone!

1. Cut out energy zappers (people, stuff or activities that are a drain on your energy).

2. Learn to say "no" even if your heart wants to say "yes" (this is an area where I could really improve)...because if I push beyond my limits, I will pay the price.

3. Even when I do say "yes", know how to pace yourself/know your limits (another area where I have room for improvement).

4. Embrace the Boy Scout motto...."Be Prepared". Be well organized (extra food, easy to prepare meals etc. on hand, key basic meds on hand) and have a reliable comprehensive infrastructure of people who can step in when something goes wrong. For example my boyfriend always complained that I tipped our dog sitter too well, and wasn't happy with her having a key to our home. Well, how handy it proved to be that I treated her well, because when I had to be rushed to emerg with a cardiac issue a few weeks ago and he was halfway across the continent on business, it took one quick call on the way to the hospital, and I knew everything would run smoothly on the home front and I could focus on getting through my health issue. I also have a backlog of quiet and easy hobbies and things on my "To Do" list that I can do on a down day, and this way I don't feel like a "bad day" is a waste of my life. In fact I will often save a novel that I have been wanting to read or the latest edition of my favourite magazine for a down day, so that when they hit I quite look forward to them because I have my "treat" saved up.

5. When I feel fine, I "Just Do It".....because I have no idea if tomorrow will be a good or a bad day..."Carpe Diem" is my fave motto. This means living a very flexible life and accepting that plans might change very quickly, which luckily I am ok with...some of my more structured/rigid friends would really struggle with that. :-)

6. Simplify. Remove as many potential complexities from your life as you can so that when your body decides to go amok as it will from time to time no matter how carefully you manage your illness, you have enough "room" in your life to accomodate it without the wheels falling off. In my case I have walked away from my career and decided not to have children so that when the going gets rough there isn't anything to worry about other than whether the dog will get fed (see #4, above), and frankly even having a dog is pushing it. I have also downsized my home to something that I can easily manage, invested in a vaccuum robot (awesome invention for anyone with a dog) and am happy to eat cake from a mix if I need to, rather than make it from scratch. Simplfying also includes living somewhere with an excellent infrastructure of doctors, stores etc. nearby. There are days when I don't feel comfortable driving, but I am still ok with walking around the corner to my grocery store. I shudder to think at what my life would look like with a string of "down days" if I lived in the suburban setting that I once was in.

7. Maintain a positive attitude. More and more studies are showing that mind does matter. Thus, focus on the bright side and don't fall into the abyss of negativity or despair. And...if it really feels hopeless, allow yourself to wallow in it for a day, then pick yourself up by the bootstraps and carry on. Given time, things will always eventually sort themselves out, especially if you subscribe to #8, below.

8. Do not live Einstein's definition of insanity (doing the same thing repeatedly expecting a different result). If something doesn't work, get back onto the internet, research research research, and try something else. Switch your doctor if they aren't cutting it. Change your diet etc. - keep an open mind and do whatever it takes. I am vegan because of allergies...reading the China Study and various other things now shows that a vegan diet is a fabulous diet for people with autoimmune issues. Is it fun? Not in the beginning (I used to eat hamburgers and steak off the bbq several times a week)...but it works for me and now I could never imagine going back. Also see my posts in this forum about my having solved my herniated disk issue as another example. I read all the new Pubmed releases that say "CVID" in them every month to see if there is any new research that might benefit me. In other words...I am constantly looking for things to change, because doing the same thing will generally only yield the same results. By the same token, if something is working...then keep it up and don't mess with it (e.g. my Subq dose and schedule took some time to sort out...but now it works well so I stick with it and try my best to not cheat).

9. Don't be a hero....aka "Better Living through Chemicals". I learned this when my herniated disks were putting me in a nasty pain place for the first time in my life, and also when we kept working on my dose of subQ for my CVID (more was better in my case). The back experience taught me the benefits of a painkiller and a good night's sleep (or a good day). Until I hit upon a solution through my research (no more painkillers required), I gave up my tough person stance and accepted that a needle in the spine every 3 months was worth whatever risks came with it if it meant I could be mobile and somewhat pain free but it took me a few months to stop being stubborn about using medication. But this applies to other types of medications too. I to often watch people suffer because they want to tough it out, and ask myself what on earth the point of that is? Do they think they will get a medal for it from someone? Do they think anyone enjoys seeing them suffer needlessly, whether in silence or otherwise? Of course everything in moderation...I am not advocating becoming a junkie here, and btw meds spans not just allopathic models but also what is available from other medical models (just make sure you do your research first).

That all being said, I think quality of life is very important, and any tradeoffs have to be worth it from that perspective....I am not prepared to give everything that I love up, just so that I am healthier, but miserable. The price for this is accepting that death is a possible outcome, and losing my fear of death has been a very important part of my journey, even though I am not very old. Still, there are many ways to live a good life, and I have landed on a lifestyle that is very very different from the one that I had 10 years ago, yet it works well for me and I am, interestingly, much happier now than I was then. One needs to be open to trying a new path, although fear of change can be quite a hurdle for some and in hindsight I have CVID to thank for my changes because I doubt I would have even remotely considered making a change if it were not for that.