A visit from my GP, who is lovely, but quite clearly believes I'm depressed. Which at that particular time I may well have been. So he's talking to me about how to lift my mood etc and all I can wonder about is what the medical experts want from me...... I almost feel like I need a nurse or doctor to tell me every day what they want me to do..... want me to sleep and rest to heal then that's fine, I can easily do that. Want me to keep my spirits up, then that's fine too - I can do that with a structure to my day, and my amazing friends and family. The issue is all the conflicting information. And the fatigue..... which is constant. I can fight through it but it takes a lot of energy and I often need a lot of help.
Even my cognitive tests showed a conflict..... quite an amusing one if I'm honest. There were two areas where I showed slight deficiency..... decision making and flexibility. This means that I either cannot decide at all or I'm so fixed in a decision that I just won't move from it. Not sure there's much change! Very difficult for those around me - they have a lot of patience. Do you want to do *insert activity here* Tricia? I have no idea. I'll often look at people like a scared rabbit. Feeling pressured. I genuinely don't know the answer. What do you want me to do? What's the right answer? Whatvwill make me stronger? The flip side of this comes when I've made my mind up about something. Mostly these are odd paranoias that have crept in for some bizarre reason or another. Something I've read, something I've heard..... a word, a look........ these can just overpower me and I simply won't be moved from my belief, no matter how irrational it may be. It's grand when it's something simple (like the kitchen chair I refuse to let my husband move from the bedroom, even though he keeps falling over it...... or the incessant need to check my blood sugars). Those things are fine. If they reassure me then why question them? They don't matter in the bigger scheme and better to keep me settled. But there can be bigger things. I won't say what as I don't want to upset anyone. But these paranoias and fears can be debilitating. They creep in, usually because of something I've read...... making me scared to read anything; in case I see something that'll give me a negative thought.
So it's a constant conflict between getting rest and motivating. I think I've half figured it out.... but every so often the fatigue will win out and I'll spend too long sleeping and then end up in a total mess emotionally, or I'll go the other way and bounce about my day, leaving myself completely exhausted.
The routine that seems to work for me is this; awake at 7am, meds and breakfast. Breakfast TV on. Stay in bed but don't go back to sleep. Spend the morning doing bits and pieces from bed - catching up with messages/ blogging/ making phone calls etc. Out of bed around 11am. Shower, dressed, lunch. Visitors around midday/1pm are good. Today I have an old school friend coming in which will be great. A happy soul, we can laugh about childhood times. She's deeply religious too and I'm not adverse to the odd prayer now so that might be a quite nice relaxing thing (kind of meditative I think). I think the District Nurse is coming at some stage to do bloods. She's lovely so always nice to see her happy face. At some stage my wonderful friend who has literally held me up so many times will call in. She barely lets a day go by without calling in. And if she can't call in, she is always in touch. Like my sister and the big man, she is another rock. There are friends and then there is her...... I've no idea what I did to deserve her, but I am so thankful. Even my dog loves her. Jumps up on her and follows her everywhere. Fair judge! My family think she is wonderful..... because she is!
So that's today...... enough planned to keep my head up, but time to get an hour's doze in the afternoon if I need it. Which I usually do.
In yet another twist.... my hubby was taxing the car yesterday and got chatting to the woman at the counter about surrendering my driving license. Turns out she knows all the information very well because her sister has a brain tumour........ her sister is also blogging, on Facebook. As you can imagine, they got chatting. Her diagnosis is essentially the same as mine. I read some of her blog last night and got in touch with her. It's helpful to support each other, although as usual I have to be very careful that I don't let one sentence stick in my mind and turn into a damaging negative thought for me to obsess over. Particularly when the intention was the opposite. As my GP keeps telling me..... when you have those thoughts you need to grab them up and throw them away. He's right of course, but it can be difficult not to keep going back. It's friends and family that pull me away from them. Distraction. Laughs. Happiness, good vibes. Belief in me. Strength.
You remain my cage. There are some who have become the strongest of links, but everyone helps in their own unique way. I always find it amazing how people seem to just instinctively know..... I'll be in a negative place and someone will send something that was exactly what I needed to hear at that moment. It happens all the time. Sometimes I ask for help.... I have to..... I'll ask people if they can call in to see me or make me laugh etc...... but so often I don't need to...... you just do it, through some sort of instinctive connection. Thank you xxxxx
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