Well you know what, sometimes it just is not like that at all.
I am not a whiner, or a moaner, or a victim to my circumstance, but I am human and I do not feel good every minute of every day of every month of every year. Living a full life means I get to experience the good days and the sh** days.
Right now I am having a not so good time of it - contrary to popular opinion on Facebook!! I know why though. I am TIRED. Yep, the dreaded T word and unfortunately one of the side effects of being sole carer of my DD is not only physical tiredness, but mental and emotional exhaustion. It is getting towards the end of what has been a huge year for us on so many levels and I have not had a full break since I went to Bali back in July. I love Bali, I am grateful to be able to go and I am a very blessed woman in very many ways, but nine days off every 6 months doesn't cut it anymore.
I am also tired of not speaking the truth of my feelings. I am so over caring about whether people think I am feeling sorry for myself, or if they think I am wallowing in self pity.
Believe me I am not. I am OWNING this and ACKNOWLEDGING ME.
As all people who care for a vulnerable person know, it is not our privilege to put ourselves first, care for ourselves first, do solely what we want. Everything a carer does revolves around the person in need.
My day starts at 7 a.m. when I wake up and lie in my bed asking my higher power to give me the energy to get through the day. Everything is groundhog day routine because it has to be.
Get up, get DD's breakfast prepared, get her lunch pack prepared, waken her up gently as she is not a morning person, cajole her out of bed, put on the big smile and say "GOOD MORNING GORGEOUS.. GUESS WHAT YOU ARE GOING TO DO TODAY???" Kiss her, cuddle her, have a conversation about her day and make her smile before her feet even hit the floor.
Then I turn on the TV to a channel that she likes as it keeps her in a good mood. Next, I settle her into where she has breakfast, then go to to prepare her bedroom and look out her her clothes for the Carers who come to dress her in the morning. I love these Carers and am eternally grateful for the amazing job they do, but believe me having someone come to your house at 8 a.m. in the morning every weekday means the happy smiley face has to be on and that too is tiring.
Once the Carers are here, Caragh goes with them to the bathroom and then her bedroom. I at that stage pack her lunch bag, get her monies ready for the day and am listening out the whole time; Caragh can be moody, excitable, over-tired, feeling sick, upset, or worried about change and all this can affect her attitude towards the people helping her. So of course I cannot switch off.
That caring moment over and done with, Caragh wants to sit next to me, or follow me around while I am trying to get my own breakfast prepared. I try to time it that I either manage to have my breakfast before the next Carer arrives to take Caragh out, or if that is not going to work, to wait until they are all gone and then sit down to have my breakfast in peace.
While eating, I ponder all the things I want to do: study, clean the house, do the laundry, Christmas shopping, yoga, swimming, meet friends, physiotherapy, meditation - you name it I have loads of things I want to do and more often than not at this time of year I just end up sitting feeling like stunned mullet and it is imperative that I be extremely mindful of my exhaustion levels as it could trigger an atrial fibrillation event, which for obvious reasons I don't want to happen again! My mind instead of focusing on me and my needs inevitably wanders onto all the things I need to do for Caragh: searching the real estate pages for the house we are going to buy for her, interview more carers to join the team, think about the person who will eventually live with Caragh in her own home and what the job description and role will entail, research what social / community activities we can enrol Caragh in.... and the list goes on ad infinitum with all my wants and needs flying out the window.
Don't get me wrong, I push myself to do as much as I physically and emotionally can. I make sure I get to yoga as it saves me from ending up in a wheelchair I am sure! I socialise with friends on the weekend and try to get out and about as much as possible, but that takes planning and money!! I have to ring around and try to get people to sit with Caragh, sometimes going through a list of carers, hoping to finally find someone who will help me out. All I can say is thank GOD for the funding I was given to help pay for these beautiful people that help me get a break.
While I know next year a lot of this will be much easier, I also know that as a Mother, there will be no switching off from this situation.
When Caragh comes home from her day out, she needs a rest, then of course the whole evening/night time routine kicks in, dinner, bathing, bed and dealing with a tired girl. Sleep time is normally around 9.30-10.00 p.m. Then I clean up, with all good intentions when I'm done, to read, write, wrap pressies, study some more, but it's 10.15 p.m. and yes you've guessed it.. I am exhausted.
This happens every day of the year without fail. I am grateful to be alive. I am grateful for my angel daughter. I am grateful for my home, my boys, my friends. I am grateful for the financial support I get from Caragh's dad and by way of funding. I am truly thankful for all the support I get from Caragh's crew. If I didn't have all of the above I would be 6 feet under or locked up somewhere by now!! The thing is, even with ALL that support, caring for someone day in day out, before you can care for yourself is truly and deeply exhausting. However, my child needs me - what else am I going to do? I love her.
I had to write this tonight because I am feeling it. I am voicing the not so nice stuff. Tomorrow I will get up and do it all again and probably won't be feeling so fed up and things might not be so overwhelming. Who knows. All I know is this is how it is right now.
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