A few months after the diagnosis I was floundering. I will admit I was a blubbering wreck. Never at home; that would not be fair to my husband. I have my own office at my job; well technically its a whole floor in the building. I joke that I don’t play well with others: its probably actually not that much of a joke as my tolerance levels have diminished with each year. I like my space when working. I can sing along to the radio; badly. I can converse with myself which I do daily. I can tell myself off when I do something wrong and I can cry when things get too much. Or even better I can laugh my head off when something strikes me as funny and no one will call for the men in white coats.
During one of my meltdowns my sister told me I was the strongest person she knew and she had no idea how I was coping with it all. I looked at my phone (we were mid telephone conversation) and frowned . Me coping. Oh well just give me an Oscar now, I’ll work on an acceptance speech later. I felt I was anything but. My husband has other health issues and the bad days were plenty. Not only was I working full time but I was having to do all the little chores that he couldn’t do at that time. Trust me you don’t appreciate how the little things your partner does add up until you are doing most of them as well.
At this point I seriously contemplated giving up my business. Its an online store selling knitted and crochet items. Its never going to make me rich but its mine. I can’t have idle hands so my argument is it keeps me out of mischief. Well some of the time at least. My online friend convinced me not to shut up shop. I may not be able to give it my full attention but I need it and she is right.
Now I love to read and during these first few months I binge read like I haven’t since I was a teenager. Taking that step into another world. Like stepping through the wardrobe into Narnia. Letting someone take me by the hand and lead me on their story. It was my way of coping. Keeping my sanity. Shutting out all the questions, uncertainties, the demands of other people who hadn’t got their head round how our lives had changed. My husband was still being asked to do jobs for friends and family that he was no longer able to do. It was frustrating when all you want to do is tell them to do one. Mentally I am head slapping them hoping something will register. The eternal optimist!!
During this journey you need to make time for yourself. Go running if that is your thing. Have a trip to a spa once a month. Meet a friend for a coffee or glass of wine. Have a sneaky afternoon trip to the cinema I won’t tell on you. You need that time. My husband needs me to have that time so that I can make sure I am there when he needs assistance. I’m not going to much help if I have burnt myself out trying to be superhuman and doing it all. What doesn’t get done will still be there tomorrow. If you get chance for a weekend away together, don’t feel guilty do it. There are no set rules. No promises of how this goes. Make the most of what you can when the opportunity presents itself.
Other people may think you are being selfish: taking you time. You aren’t. I promise you if the boot was on the other foot they would do the same. No one knows the emotional stress, the worry, the uncertainty you are in right now. Thankfully, taking time for myself has been one thing I have be able to justify easily. Truly the only person you can rely on during this journey is yourself so listen to that little voice inside. If it tells you to stop and take even ten minutes to yourself do it. Grab a cuppa. Go for a walk outside. Lock yourself in the loo if you have too. Take a few deep breaths and then go back to whatever it is you were doing and nail it. I know you can. I believe in you E x