After my recent migraine diagnosis and persistence of symptoms I am experiencing, a friend advised me to contact my Occupational Therapist (OT) for a review. There are many ways I am struggling to be independent at the moment and as I am trying to take some of the pressure from Mike, I am in desperate need of some guidance and perhaps aids to enable me to be the Mum and Wife i want to be, well at least attempt it anyway.
I first met my OT just over three years ago along with a physiotherapist. They were part of a local care programme my GP had referred me to and I had no idea what to expect. The service they offer is amazing and without their continued support I would not have made so many steps towards independence. When they first came I was living either in bed or on the sofa. Every movement was painful, I was extremely weak and i could not use the stairs without assistance, so on days I was left home alone I would stay upstairs allowing me access to the bathroom and Mike would leave me with a picnic to last me the day. After their initial assessment the OT and physio worked with me separately to improve my day to day living.
Through my OT I received a wheelchair, a wheeled trolley which I am able to use to move items around, a stool that can be used in the kitchen to save me standing at the kitchen side, an inflatable bath seat to aid me getting in and out of the bath, a grab rail in the bathroom, a grab rail by my front door to aid getting in the house, a mattress topper and I was incredibly lucky to have a stair lift fitted to allow me to be downstairs and still get to the bathroom when I was home alone. Mike and the kids were especially happy to get the stair lift, but not so that I could be downstairs more, they love using it to carry their stuff upstairs and downstairs and the kids like to lie on it with their arms out pretending to be a superhero. I suppose their have to be some perks to having a disabled person in the house.
Alongside the aids I received, my OT also helped me work out a routine, advising me ways in which I can gradually increase my activity levels while still allowing myself rest periods to try and prevent flare ups. The objectives were simple, firstly to be able to enjoy my wedding day and holiday (we were getting married the following year in Rhodes) and secondly, to be a more present Mum to Lexie and Hayden as the children were off being cared for by others much of the time as I was unable to look after them while Mike was working.
I’m happy to say I was able to enjoy my holiday and wedding a lot more than I had hoped to. As for parenting, this is an ongoing progress (pretty sure this is the case for everyone) but thanks to them being a little older and more independent I am able to have them home with me a lot of the time while I still keep trying to do more for them and with them.
While waiting for my OT to visit, I started to make a list of what I struggle to do around the house, as well as the things I would like to be able to do. I was unsure what she would be able to help with but I decided it was better to ask, and if she is unable assist in that area she may know who the right person to ask is. Apart from my persistent migraines and neurological symptoms, I also wanted to discuss ways to help Mike. He has been struggling with some of his own health issues lately and is unable to keep up the pace of carer, parent, husband, cleaner and main income provider…poor bugger!
So my OT came to visit Monday and we managed to cover most of my list. We talked about the importance of alleviating the pressure from Mike and she is coming back to visit with a piece of equipment that Mike can use when I’ve had a fall. I’m unsure how it works and it’s not something given easily, but as I am falling quite often at the moment she believes we are entitled to it and would like us to try one first. It would mean that Mike won’t hurt himself lifting me when I’m flat out on the floor.
I asked some questions that she was unable to help me with but she has said I should see my GP about some referrals. For example I haven’t had much help with medication since leaving the hospital and my headache has been constant since. She had advised that the GP could contact the neurologist and find help and advice this way. We also talked about sleep and that I struggle finding a comfortable sleepIng position. So today I’m being sent an inflatable cushion that will raise me into a more seated position while I am sleeping. Here’s hoping for a good nights sleep!
We also made a plan to try and get me cooking again. Moving around in the kitchen, lifting hot items and chopping are all a little challenging for me, as well as reaching things in the cupboards because I’m a shorty! I was hoping she would suggest some kind of step for the kitchen as my step ladder is heavy to use, instead she’s asked me not to be stepping up on anything to prevent any dangerous falls. So now I need to rearrange my kitchen to make sure I can reach anything I need…I’ll add that to my mile long to do list. Now I’ve had it in mind that Mike and I should be bulk cooking so there are always easy to cook meals in the freezer, but my OT pointed out that if was the easiest solution to me cooking, we would have done it already. So the plan was to start with one meal, one day a week. We went through what I can and can’t manage when preparing a meal and came up with a simple meal plan. On Wednesday I planned to cook a chicken curry (from a jar) with microwaveable rice. I hit a few bumps in the road on the day, mainly because Mike had forgotten to take the chicken out of the freezer and we had no rice, but I did it. After I had demolished my cuisine I proceeded to sleep on the sofa for 4 hours, but I achieved my goal…yay me!
On Monday my OT will be coming back to show us how to use our new equipment and if I feel human enough I hope to cover more of my list. I feel lucky to have her support and guidance when I’m having a flare up, not only does she provide me with the aids at home, she gives me small goals to focus on to help me feel like I’m achieving rather than failing. I highly recommend being referred to Occupational Therapy if you need help with independence. Try and find out what local services are on offer to you and ask your GP.
Much love my fellow Fibro warriors and Spoonies. Have a lovely weekend x