We’ve started the fundraising a week ago and it has a big impact on our family life. Like me, Jane and Rosa are not the asking for help type. So the fundraising and the reactions to it results in quite a bit of tension in the house. This had several consequences. We are all three very tired, where my fatigue with a good night’s sleep is a bit better again. The fatigue of the girls is again a completely different story. They do not charge if they have a good night’s sleep, if there is something as a good night’s sleep. I see the bags under the eyes with the day getting deeper and blacker. Fortunately, there is such a thing as concealer, although I am probably wrong. I’m a source of ridicule in the house when it comes to using makeup.
Jane’s frequency of fainting is rising again. With the reduce of her energy consumption she went from 5 to 10 x per day to a few times a week, we are now back at 2 to 4 x per day. Furthermore, she vomits more and more often, the symptoms seem to be increasing. She tries to rest as much as possible, but occasionally it is also important to take a break and do something else than manage your illness. Which will be paid the next day with more fainting, pain, fatigue and vomiting. It remains difficult to find a balance between rest and living. I worry about the vomiting and the fainting. It is a huge risk with the underlying diagnosis. What if something goes wrong and a cervical vertebra shift in the neck? Or what if she hits her head while fainting or falls down the stairs? That are things that you take into account. Now more than ever.
Rosa is extremely tired and miserable. When she gets home after her work she plop down on the couch and stays there until she goes to bed. This remains until she has to start working again the next time. On days when she don’t have to work, she often don’t even dress. If she’s going to work again, she need about 3 to 4 hours to get ready. That’s with rest periods between waking up, dressing up, hair combs, make up doing and some eating. When I’m home from work I take her with the car as much as possible, otherwise she rides her bike. Cycling is less tiring than walking. I am worried about this, the other time when she went cycling her fatigue caused her to ride against a little pole. Which resulted in a knee dislocation and multiple bruises and abrasions. And here too the risk of dislocating something in the neck, Rosa’s neck vertebrae are extremely mobile and move all sides even without falling.
And then you come to a tricky point. I keep everything locked up, will not let someone notice if something is wrong or if I am worried. I have very skillfully furnished a cabinet with a lot off drawers where I put my feelings, then I close the drawer and never open it again. It has been a very useful coping mechanism over the past years. In addition, I don’t want to bother the girls with my worries either. They already have enough on their plate. But as I have understood very recently, it’s important for them to show them that I am worried and that they want me to talk about my feelings. That I don’t go into control mode, but also occasionally address the smaller things and take time for their feelings. So the skillfully designed and closed drawers will have to go open and I find that difficult. Because I’m afraid that the worries and concerns I have are so big that I’m no longer will be able to function. So I’m looking for a middle ground in this. So if I react differently than you are accustomed to from me in the coming time, know that I am searching in the minefield of my feelings. And that I’m doing my best.