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If you're ever wondering what does chronic fatigue syndrome feel like?

If you have a friend or family member with CFS and you wonder what chronic fatigue syndrome feels like...

I described the tiredness from my second #pfizer as "light" and "refreshing".

I wasn't exaggerating, either. Fatigue from #MyalgicEncephalomyelitis is so crushing. Its like being hit by a bus - you feel it in every muscle in your body.

The tiredness from #pfizer was the first time in years being sleepy felt.....okay. Normal. Light.

And after I slept...the tiredness was gone.

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My #2nddose 2nd dose of #pfizer #PrimaryImmunodeficiency

My 2nd vaccine was very much like my 1st. I got compliments on my cold shoulder top.  The actual injection did not hurt and I was asked to wait 30 minutes again to make sure I do not have an allergic reaction.  I giggled to myself overhearing several older people planning their weekends away and all the things they plan to do.  I felt happy for them.  I knew my path to normalcy would not be so clear or easy.  I have an antibody deficiency disease.  Am I even making antibodies to this vaccine?  Would my T cell response to the vaccine be enough protection?   These are all questions researchers will be looking to answer.  I had also already scheduled an appointment with my infectious disease doctor in April to see how I made out with the vaccine.  Overconfidence with this virus is dangerous.  Slow and careful has been my approach to the pandemic & it has taken me this far. As one fellow primary immune deficiency patient put it,  In past pandemics like the 1918 Spanish flu, how many primary immune patients could have survived?   How many patients like us could have survived even without a pandemic back then?   All our medical science & technology has been invaluable to patients like us.    I called our grandkids on the way home to let them know grandma will be playing with them outside soon.  They are too little to understand really but I have even dreamed of just being able to play with them again without fear of this virus.  I know two weeks from now even if not fully covered by the vaccine I will be the safest I have been in a long time.



Later that night my arm was sore again.  I struggled through a Zumba workout and went to bed.  In the morning my neck & head hurt, but I am a migraine sufferer so I can't attribute it to the vaccine with any certainty.  With some ice on my neck and Tylenol, I felt better within the hour.   By later that night my arm felt better and I was able to resume all normal activities.






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1st dose of #pfizer Vaccine #primaryimmunedeficiency

I got my 1st dose of Pfizer vaccine on Feb 24,2021. It was a moment I had waited for this whole pandemic.  In the weeks leading up to my appointment I had worked hard to get a spot, dealing with crashed websites and too few appointments considering the huge demand.  I do feel patients with comorbidities could have been prioritized a bit more given that throughout the pandemic most deaths from Covid 19 have been in patients with pre-existing conditions as well as those who are an older age.   It was finally my turn and having an appointment in my hometown and not months away was very much like winning the lottery.   I got there on time wearing my mask, goggles and cold shoulder blouse so getting the actual injection would be easy.  The hospital where I was vaccinated was not crowded and I was taken right in.   I had been in contact with my infectious disease specialist about the vaccines but I had one question I never thought to ask.  The only appointment I could get for my vaccination was on a Wednesday and that is also the day of the week I get my weekly immune globulin infusions.  Can I get both the same day?    It turns out I could have but at the time no one had an answer for me so I made the decision to get my vaccine & delay my infusion by 24 hours.  I had always read that I can do that

My actual vaccination only took a minute- even with questions I had.  It didn't hurt at all.  I was ushered into an auditorium to wait with other patients for 30 minutes since I have had anaphylaxis in the past.   They offered us bottled water and a choice of individually wrapped cookies.  I was not taking off my mask for anything.  I brought my cookie home to eat. Later that night my arm began to feel sore.  I put some ice on it, and instead of the kickboxing workout I had planned I did some Zumba instead.  A little less arm work!  That night I had some trouble sleeping since the vaccine was given on the arm I usually sleep on.  The next day I felt fine.  No pain, no symptoms or side effects.  I got my SCIG infusion later that night and prayed I was starting to mount an immune response.