Just over a month ago I was notified at work that I only have 4.25 hours of sick leave left until January 2016. This is because of my 2 hospital visits when I relapsed with MG earlier this year, as well as the time I had to take to remove my massive ovarian cysts that had developed. I was very frustrated with this news as I am not usually a sickly person & I had not taken leave for a simple cough or upset tummy - they were legitimate reasons that saw me going to hospital (and even ICU for a short time). To be told that I pretty much cannot get sick again until 2016 was not the worst of it; its that if there is another emergency &, God forbid, I have to go to hospital again or suffer any form of relapse I will have to take unpaid leave & truly suffer because of this silly illness.
When I got this letter, I could feel the start of a cold coming on. I had a sore throat - but nothing to really write home about. I was so determined not to get sick. I stocked up on Vitamin C (it is a big joke in our family as Vitamin C is prescribed for everything & we would all rather take that than any other chemicals that a doctor prescribes) & multivitamins, as well as plenty of Berocca. Now when I opened the email, I realised how serious this was & I really could not get sick. Usually when I get sick it affects my MG as well, as my body is so busy fighting off the cold/flu that my MG worsens & I often start slurring my words & battling through daily activities. This in turn can lead to me having to take time off to recover from the flu, but also to build up my strength with my MG & sleep lots so that I don't relapse.
I fought it as hard as I could, but unfortunately it got the better of me. Eventually I ended up going to the doctor one day at work as my nose was terribly blocked, my throat so sore that I could barely swallow & I felt terribly weak. The doctor diagnosed me with acute sinusitis & the start of pharyngitis, & put me onto antibiotics as well as booking me off for a day. I went home, slept & took my medicine like a good girl but things did not improve. (Note: You have to be very careful which antibiotics you take when you have MG. Once I had the wrong one prescribed to me & I ended up in ICU battling to swallow & breathe)
I felt grim. There is no other way to put it. I never get flu - usually just a cold & then it disappears. This time I was getting all clammy & feverish, I had no appetite & was constantly nauseous, & I did not want to leave my bed. However, knowing that I had no sick leave left meant I had to go back to work & attempt to push through.
My colleague had taken a weeks leave at the same time so I knew I couldn't afford to be sick as I was doing both of our jobs & couldn't let my boss down. I tried. Really I did. I could barely concentrate & my nose was so blocked that I couldn't even swallow. I was weak, felt faint & had absolutely no energy. I was in bed by 8 most nights! Eventually my husband told me he was taking me to another doctor as clearly the antibiotic was doing nothing for me, as I had finished the course 3 nights earlier & was just getting worse.
I walked into the doctors rooms & already felt better. This was a doctor I had been to before & he knew my medical history. He knows I don't make a fuss about nothing & he knows I try be Superwoman through everything! He did all the usual checks & told me I now had sinusitis, flu & laryngitis. I was put on a much stronger antibiotic & told to take 2 days off work to rest & not to really leave my bed for the weekend following. He was very stern in this instruction - even when I explained the situation I am currently in. He said if I don't take time off I will not get better & this will make my MG even worse.
I freaked out! How could I take more time off work? Would I lose my job? Would they think that I don't take my work seriously? What would my boss say? Would they think I was making a fuss about nothing?
I got on the phone to my HR manager at work & asked her if I could take the time as annual leave - which was fine. I still had a terrible feeling in the pit of my stomach, but felt too ill to do much except obey the doctor & allow my husband to take me home & put me to bed. I also asked a very good Homeopath to prescribe me some drops to take in conjunction with my antibiotics.
This flu was awful. I fought it for a good 2 weeks & still don't feel quite right. My MG has gone down a bit too. I am slurring my words & battle to swallow by about 6pm. It sucks that a simple cold turns into something worse so easily - just because I have no immune system from my medications. And it is so annoying that the moment my body is trying to fight off something else my MG flares up & shows its ugly head once again.
Now I am just taking things easy. I am, however, trying to see all those people special to me & those that understand if I am talking funny or take an hour to finish my meal. We are getting out more, as this past year we have been like hermits. We have had wonderful special time together, but unfortunately have neglected a lot of our friendships. We are lucky in that our friends have been compassionate & understanding to our situation, & still make the effort to see us or invite us out. It means the world to me & I have finally come to realise that I cannot be ashamed of my talking as it is beyond my control, & my friends love me - warts & all! I have always tried to hide it & would just keep quiet when out on public or hide behind husband & let him have the say for both of us. This is changing - at last.
Me & husband at a dress up party |
With some truly special friends |
Having my time off work to rest & recover has really made me see this. And I am so grateful. It has been difficult & I have had to cut some ties that I have been holding onto for too long now. At long last, and probably for the first time since being diagnosed, I am comfortable within myself. I have accepted my MG & the person it brings out occasionally. I do have MG, but that is not everything there is about me.
Friends & family; thank you for loving me through everything & for accepting me for who I am. I love you & don't know what I would do without you! At long last the real Megan is going to come out; & you will just have to bear with all the slurred talking as I do have a lot to say & can't wait to spend more time with you making memories xxx
Love you guys! |