Surviving Week One

Surviving /Living life to the full

I have survived a whole week with the tumors. This has been the most eventful period in my life. My symptoms continue to spangle my head; however I find sharing in this way a big relief ‘cathartic’? I plan on continuing whilst able to express myself through words. Many thanks to JH for the technical help, and attempting to edit the content after his hard day at work. Also ongoing thanks to RH for his patience in trying to teach his father how to use a mobile and text. Today I sent my first ever text on a personal matter. This is a steep learning curve. If I can do it with this hindrance in my head, there is potential for everyone to embrace technology. To FH and AH for my day to day safety and wellbeing.

My blog is likely to consist of three regular themes:

1)      Symptoms

Visual

Perceptual disturbances are perhaps the most dramatic and disturbing. And as yet I am unable to gauge whether they are getting worse, what exacerbates them, and what stops them (if anything). Having a brain lesion has meant I am banned from driving which I totally understand. Though having passed my driving test at eighteen it’s big change which hasn’t yet sunk in. I have not dared to venture out on my bike which was always my preferred choice for getting around town. Moreover it means that Anne is doing the driving where previously I would have led where driving was necessary. I will not attempt to identify or personally thank people in this blog. Many thanks for the offers to help out with this as needed which Anne will take up as necessary. Not that we were over dependent on the car day to day, week to week, apart from in my job which I am unable to perform for the time being. Hopefully this may change in time. I suspect I will not be allowed behind a wheel for some years.

The intensity of the visual disturbances is not consistent and may be mild to severe. What is consistent is the presence of the sensation of a flashing light about my right temporal area. At the moment it is without noise, in contrast to the four-five week period prior to admission when it was accompanied by a loud whooshing sound which I thought was closest to hearing a wind turbine when standing close as able, with accompanying intolerable headaches.

Headaches are present daily, though nowhere near as bad as in the build up when they were severe and intolerable. I am convinced the medication is helping along with the other coping strategies.

Coincidentally a visual has just started with the emerging flashing, like the Swedish Christmas candle, (I am sticking to this as without music and sound, amusement arcade, disco ball does not fit and Kaldescope images are two dimensional to effectively help me to convey or reflections from a river/pond from the sun) multi coloured light with green, white and pinks. This one lasted for about 20-30 seconds and did not include the more distressing elements. These involve the opening up of the peripheral vision as if I can see all around and at its most intense, walls and structures seem to have melted away hence, my use of the term ‘derealisation’.  The peripheral visual problems envelop my whole perception and seem to emerge from below going over and around my head. Today, this experience has occurred between eight and ten times. I should point out, that I am always aware of the nature of these perceptual disturbances! I believe it is the brain compensating for the effect of the lesions on the visual and cognitive centres. It is best described as imagining that what I perceive in front of me is mirrored behind me.

 I have not yet felt depersonalization, perhaps because of the techniques applied as described. When this happened in the shower earlier today felt exposed to potential onlookers and is pretty scary. It also happened when Anne and I were out the front of the house. She had gone back in closing the door believing I was able to make my way in via the side gate. When I turned to try and orientate myself, I felt totally lost and almost panicked (I used breathing and grounding). I know I am have a potential risk of serious mental breakdown and reassure myself that I am not losing my sanity, attributing my current problems to the tumors. However, I am realistic enough to recognise that depression will be a real risk in the future. I have not experienced auditory or other hallucinations though within the peripheral vision it is difficult to make out stuff and I sometimes wonder if Anne or someone else is standing alongside me. Because of the anxiety I experience, I am also hypervigilant to potential threat. Confidence is reduced, and I am not sure what memory how my memory is being affected. I am certainly compensating by writing lots of stuff down.

Constipation (warning: poo)

Today I realised I had become constipated which manifested as, excuse my language, as if the content of a packet of Maltesers had been inserted into my rectum. However, once this was aided, I was able to pass normal motion. What a relief! So for now, on plenty of fluids and fruits, and my appetite has remained buoyant.

Other’s Observations:

FH reckons things are better on an evening, when my mood is improved.

Limbs

I have noticed a couple of involuntary jerkings of the legs whilst lying down in a relax manner.

 2) My personal strategies for managing.

I am writing this to benefit others, and to provide myself with a documented record of the condition that is accessible to my carers. However as stated previously, you MUST seek professional guidance from your own GP/doctor before attempting or embarking upon anything that you are interested in. You are responsible. I mean no harm and wish you all well. Common sense.

Gradually establishing a routine for each hour of the day which covers all ‘Activities of Daily Living ‘(Ref Roper N). Therefore times for going to bed, getting up, meals and medication; Rest and activity including limiting time engage in blog use of screens. Limiting phone/house calls. I have not yet got the routine where I would like it to be mainly because the symptoms are so unpredictable. ‘shifting sands’ and affect concentration and everything I attempt.

Medication: I have been prescribed steroids to reduce the associated swelling which will hopefully realign the bits of the brain shunted out of place by the Tumors and no doubt messing up mental functions. Prescribed pain killers as needed. I have continued to use the subjective scale used in hospital for gauging my own pain scoring out of ten [I presume ten is severe –extreme & perhaps need to check this out]

Normal Activities as much as possible. Washing up, taking bins out helping out with cooking etc.

Appreciating  nature.  Lots of birds about at the moment.

 I continue to use Mindful meditation and yoga as a general coping strategy as well as routine and common sense when it comes to pacing and not taking on activities which may place others at risk. Which I suspect is helping with my mood and anxiety – fear and worrying

Grounding: I experience derealisation when the visual disturbances become intense therefore I ground myself by placing my feet on the floor, sometimes bare footed, usually sitting upright. I might hold onto something if the experience comes on whilst mobilizing or if I am in the shower or walking up stairs. Awareness of smells, of food, of taste.

Risk  management: I always let the family know what I am doing and in what part of the house I am in. I leave toilet and bathroom doors unlocked for ready access. The boys understand the reason for the recovery position which is something you could all explore on the internet if you don’t already know.

3) Contacts.

 I really struggle to remember details about who has contacted me, visited, and when; therefore I have to write this down as I go along. It links also to 2), as the messages and cards, sympathies and offers of prayer. Relentless support from family and friends and their willingness to accommodate my behaviour changes.