The Guilt Of Not Being Able To Do It All
It's been a while since I last wrote a blog. Not because I haven't wanted to, but because my to-do list has become so long that writing has slipped to the bottom.
And isn't that the problem? When you're trying to manage everyday life, the things that matter to you can end up being the very things you have to put aside.
So, what's been going on in my world?
ADHD
I have been accepted for an ADHD assessment. I am on the waiting list for my assessment date but the funding has been pulled so it will be at least a year until I have my assessment. I know I have ADHD, so you may ask why get diagnosed? I’m hoping that the same clarification that was brought to mine and my family’s life upon my autism diagnosis took all of those question marks in my life away, and I’m hoping for the same thing.
Having one child that is autistic and one with ADHD, I understand them both and feel like I present differently. That’s what I am looking into. How autism and ADHD fight each other. Why one can be more present one day than they other and how I manage that.
Paperwork
The paperwork is neverending within a family with extra needs. The forms are long. The help is not easy to get and the only one who has the time to fill them in is me. I have put aside the assessment of my own needs to get everyone else sorted out first and that has been detrimental to my own health.
Pain and FND
I am still a huge fan of the Lightning Process. It changed my life. The pain I felt has gone. I don’t miss the side effects from the pain killers and the roaring hot skin from the chilli cream.
The thing that I remember most about the pain element of my FND is when it would run through the middle of my legs. The Lightning Process helped me understand my own symptoms differently. I've learned to see that pain as a possible signal to check in with myself and consider what's happening in my physical or emotional world. Just as I might associate a headache with stress, my signals can show up in my legs instead. And they still do.
Instead of hyperfocusing on what is wrong with my legs, I look into what my body might be trying to tell me. And it’s working for me!
Mobility
On finishing the Lightning Process, I was walking with no support for a few months and it was great! I was nowhere near up to walking like before cancer but I was doing it!
Then I broke my foot in September by falling off a curb. I had to rest it and walk on it.
With changes in family life at the same time, my mobility lessened. I contacted my Lightning Process practitioner. I explained how life had changed and how much stress I was feeling. She reminded me that there are some things we can change and some that we have to accept. With my dad now battling cancer as well as my mum, there were stresses out of my control and in order to deal with the worries that I was dealing with, taking care of myself was more important than ever. The main focus is that this is a blip. We don’t know how long the blip will last, but as long as I don’t accept this is what my future will permanently look like, then I have a better chance of having better days. The mind is a negative creature. It is always looking for danger to keep us alive and safe, so we have to feed it with positivity to counteract it
In May I changed from a mobility scooter to an electric wheelchair to get out and about. People give me funny looks when I stand up out of my chair, but that’s their lack of education. There are so many wheelchair users that can walk, but can’t walk far, and that’s the difference. If I walk around a supermarket with crutches, my symptoms will start to flare up within 5 minutes. I will be dizzy, wobbly, my jaw will tighten… These are the first signs that a seizure will happen if I carry on. So I use my wheelchair. It allows me to conserve my energy to be able to use it in other ways, like having a shower.
My wheelchair has also allowed me to keep doing things that I love, like going to an 80s festival (see photo of me and Allison) and having a theatre trip with my mum. Without my wheelchair, I wouldn't have been able to enjoy these experiences in the same way, and I may not have been able to go at all.
But using a wheelchair doesn't magically fix everything. I still have to plan ahead, rest before an event and allow myself time to recover afterwards. Sometimes, the recovery takes longer than I'd like, but that's the reality of managing my symptoms.
My wheelchair doesn't take away my limitations, but it gives me more freedom within them. It allows me to save my energy for the things that matter to me, rather than using it all just getting around.
My wheelchair doesn't stop me living my life. It helps me live a fuller one.
Fatigue
Well this is a big one! I’m SO bored of being tired!
Whilst on holiday and visiting my family this summer, we had a few heart to hearts. I tried to plough on during the days, not resting like I should and not napping during the day. It took its toll and I was quite ill and spent the rest of the holiday managing my symptoms to be well enough to make the 17 hour journey home. We hadn’t planned to go far anyway, but I spent 10 days going from the settee to bed and back again.
My family told me how worried they were about me and I explained why I push through when I know I shouldn’t. I don’t want to miss out on the fun! I don’t want to be the boring one! I hate the limitations I put on us all. And the biggest one of all - I feel like a fraud! How can I wake up well and within an hour not be able to hold my head up or speak without slurring?!? I know that my body is telling me it needs rest but didn’t I do that all night? I could cry with frustration.
My family told me that they accept what I can and can’t do. They would rather help than see me struggle. They know that by helping me, I will then be able to join in more of the fun stuff and they are ok with that. The guilt that I feel around that is overwhelming. Which leads me onto…
Therapy
I applied for therapy in August. I’ve had my assessment and the conclusion was that I would probably get the best results from individual counselling. It'd be about unpicking where the guilt comes from. I got a call last week to say that the waiting list for this service is currently at 14 months. If I went via the charity Mind instead, I may get seen in 4 months. So I’ve been discharged and said I would contact Mind. Another thing to add to my ‘To Do’ list that I’d already crossed off once!
Being An Ambassador For Breast Friends/Singing With Rock Choir
I want to give my all as an Ambassador of Breast Friends. I want to be there for the ladies in my group. I want to fundraise. I want to share the word to help others. I want to give back and this is ultimately because I don’t want anyone to go through what I did. I know others will, so I want to be there for them when it happens. But I know I can’t do everything, even though I want to.
For the majority of the role, I can sit down, which is a huge bonus!
And then there is Rock Choir. I’ve been a member for a year now and I love it! Rehearsal is weekly per school term. I sit during practice and use my wheelchair during performances. My friends and other Rockies look after me when they see me wobble, or watch their toes when I’m wheeling myself into position at a gig!
Overall, life is about balance, isn't it?
Because my mind is muddled, I have to keep self-care as a priority. But that's hard when there is so much to do. Everything seems to have a priority deadline, and I can't figure out which to do first!
First, maybe I should take a breath?
JuJu x
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