So it’s the season when we start to look back at the year. I can honestly say that this has been the craziest roller coaster year of our lives. The highs have been unusual in their nature and have come tinged with massive low points. The lows have been monumental and the bits in between have been filled with laughter, love and gratitude.
You may remember that I don’t set New Year’s resolutions. Last year my aim was to try and come off of morphine in 2016. I can and I will being the motivational words I intended to use to remind me of my goal. I have tried so, so hard all year and particularly after both my operations, and we all hoped each operation would help me get my life back a little. Ucfortunately that is not the case and I am on the same dose of morphine and still incredibly debilitated; most of my time spent in bed. There is a little improvement but I have only had occasional days of not needing to use oramorph. I continue to wish this more than anything but have to be grateful of the improvements that have happened after each operation. This sampling of less pain has helped me to achieve more with my business and I am learning every day and feel incredibly proud of what I have still been able to achieve!
Health update:
I know many of you want to know how things are since I had my last operation in September! Sorry it’s been so long, but I have been giving the stents time to do their thing before updating you. Briefly, since my operation in September; I can now manage to go out of the house without needing oramorph just for the car journey. Therefore, I have made some progress towards my 2016 goal to cut out morphine. However, I have had to try and learn that I just need to accept that this is the situation I’m in and take the awful stuff so that I can live some sort of life as I’m never pain free! My cognitive function is much improved with many of my loved ones saying how much better my ability to communicate is and that I look a bit better. I have noticed that I feel more like me agai, which is an amazing feeling and although I still forget everything; I can have a proper conversation with my husband, I have an appointment in January to have a ct scan and cerebral venogram repeated to see what improvements there have been with the blood flow and the pressure measurements. I will update you more thoroughly then.
The Highs:
- Finally managing to have 2 of the surgeries I need and noticing some small improvements with my cognitive function and tolerance to being in the outside world afterwards.
- Being able to see my son perform his duet in his end of term play. (He was Romeo)!
- My business growing well but still just about manageable.
- Having the confidence to begin to sell my poetry and it becoming one of my best sellers; new lines being planned for 2017!
- Getting a stairlift so that I don’t have to go through labour pain (or worse) just to get up/downstairs.
- Completing my first ever craft fair.
- Having a big joint party for my husband and my eldest; where I was able to actually listen to them play all together!
- Making home improvements; I now have ramps to access the front and back of the house and creating a day room, so that I can spend more time downstairs.
- Learning new business skills and joining a FB group to help me grow in confidence.
- Losing some of the weight gained whilst bedridden and developing hypothyroidism.
The Lows
- Having 2 serious operations; having a piece of skull removed and having brain stents in a operation with a very high risk of stroke; very scary decisions.
- Being diagnosed with 2 new conditions: hypothyroidism and neutropenia.
- Getting a stairlift (at age 38-now 39) was a massive thing to admit a need for.
- Putting on lots of weight due to being mostly bed bound for 4 months.
- Being dismissed from my job and realising I’m unlikely to get back in to teaching.
- Our son diagnosed with migraine (huge guilt with this one).
- Fighting to overturn my neurosurgeon’s decision that a stent would not help me.
- Having certain friends and family members misunderstand that the operations will ‘fix’ me. IIH has no cure. I may get to a better place, but I will always have this condition. This is frustrating but I’m very lucky that this is only a handful of people.
The in-betweens
- Having an amazing family that will always be by my side and are my reason for fighting. My 3 boys mean more than I can even try to express
- Amazing friends that help us, are always there for us and understand!
- Deciding to have monthly cream teas; including an amazing one at a castle for my birthday!
- Belly laughs with my family (even though it causes great pain)
- Difficulty finding new carers but I think we’ve finally found the right people.
- Becoming officially self-employed.
My goal for 2017!
I recently joined a fantastic Facebook group where we are encouraged to go live. I have managed to in the group and after great feedback will be trying this out on my Facebook page; Paprika Jewellery and Accessories in the new year. I thought the group would help me to build my business but I quickly discovered that I actually need to build on myself..
So all of my highs, lows and in-between have come together and made me focus on my goal for 2017; I WILL BE KIND TO MYSELF. I have listed out the steps to do this and have listened to my friends, my husband and myself and realised that this is what needs to be my priority, I will post about this and the journey I’ve been on to get to this point in the new year. So, this just leaves me to say that I wish you all a very Merry Christmas and Happy New Year. I will see you in 2017 where I will be doing this!
Laughing While You’re Crying 