This wonderful blog post is written by Jade over at The Parenting Jungle. Jade like me has a chronic health condition Fibromyalgia which affects her as a Mother. However illness does not define us and does not stop us from parenting. Motherhood with illness is just a struggle we are both learning to manage as we adapt to a new normal and give our children the best we can.
I spent the last two days predominantly in my PJs. You don’t need to call the parenting police my little man is with daddy for a week; no doubt making forts and eating hobnobs. I am not hibernating or idle, I just have nothing in the tank. The tank is empty, the wheel is turning but the hamsters dead. Insert witty quips here.
You would think with all this free time I would be being ridiculously productive, writing a post a day. I am not. If I get down the stairs to make a cup of tea I am happy. In fact it has taken me a good few weeks to find the motivation to write this post. Firstly because of the pain in my hands stalling me and secondly because for the first time I am not sure how to write it honestly, with grace. Or convey how I feel with the right words. So please forgive these few brief, clumsy lines.
I began blogging almost four months ago when I had a week off work after having a mischievous lump removed. I did not recover quickly. I got the flu, or a virus, perhaps it was glandular fever. Different doctors said different things. My energy as I knew it before did not come back. ‘Give yourself time to heal’. My son enjoyed playing doctor with his little red case, we snuggled up in my bed and watched Disney. There were lots of cuddles. I took more sick days than I have in a lifetime.
I got frustrated and I felt guilty.
Some days getting across the playground to collect my son felt like a marathon. It frightened me.
The best I can describe is that all my muscles felt like I had severely overdone it at the gym; constantly throbbing, aching. My chest, neck, arms and hips were all really painful with no reason. On bad days my hands get tremors and I would wake in the morning feeling like I had not slept at all. I’m describing it lightly…I have had viral meningitis twice and felt better then. Being unwell is no fun but being unwell as a parent notched up the parental guilt to 1000. The doctors thought it was rheumatoid arthritis or my thyroid. It wasn’t. I waited and didn’t want to constantly keep going back since my bloods were fine. Appointments are time consuming and stressful.
I did return after a month or so because I felt it was not fair to my son that his mummy was no longer jumping with him on the trampoline, or struggled to play superhero’s and spent so much time in bed. Our outside adventures dwindled. I worry about the effect on him and my partner. It breaks my heart a little but have come to realise there is no shame in having limitations. They diagnosed Fibromyalgia. I am still not sure what it means, they gave me leaflets and said come back in a month. At the hospital they said I need to wait until 6 months for an ME diagnosis. It seems to be all labels and no clarity at the moment.
I need to accept a lack of control and that I can’t force myself through it. Heat and anti-inflammatories help as does knowing my limits. If I need to rest I do. As a parent I make sure the little energy I have goes to my son; the gym, nights out are put on the shelf. Some days it drags me down. I was on the train the other day and it suddenly hits you, like someone turns the electric off and I just needed to go to sleep. After climbing the stars my legs get the shakes.
Parenting with fibromyalgia is full of challenges. I’m doing my best to take care of myself so I can take care of my family. The way I live my life has changed…adapting has been hard and I can be my own worst enemy. I need to say no and learnt to ask for help. Being a caring, involved parent doesn’t require constant physical activity. I am daunted at the prospect of managing this long-term but I am just at the beginning and there are some amazing supportive people out there.