Even shopping is tough.

I've had to go to the shops in Kingston twice this week. I hate it. The appointment today was for the optician, to change my glasses. I had taken over a month (since returning from our holiday) to feel able to phone them to book an appointment, even though my glasses were literally hurting my nose and several times I just wanted to throw the bloody things across the room! But I felt my brain was just too muddled for a phone call... I couldn't work out what that first sentence would be without confusing them or them having to ask me to 'say it again please'. (And yes this has happened many a time!)

But I'd been forced to make a phone call after I took my son shopping (only going to one shop, getting out of there ASAP) as we both needed new shoes. But at the till my mind went blank and I totally forgot the PIN, even on a couple of attempts. When the cashier said I had one last try, instead of trying again I decided to get my son to pay for one pair of shoes so I could just use my card contactless to pay for the others. But afterwards I was in a complete tizzy, my brain buzzing... I somehow managed to walk at lightning speed back to the car, weaving around people in a freakish manner. It was like slow motion where I just aimed for the gaps in the crowd, and somehow my coordination played ball! - I think from the adrenaline. My son telling me to slow down as he couldn't walk that fast behind me with a big bag of shoeboxes!😁

I got home and rationalized if I went on my internet banking I could try and enter the PIN to work the number out while I logged into the card reader (as I've done weekly since I got it with no previous issues.) But I again typed in the wrong PIN and it blocked my card... Hence the phone call (The PIN is still a blank... I've had to ask the bank for the number to be resent to me!) 

Anyway, after that phone call (which I had to call twice and get my husband to listen to which was the correct number to press as none of the categories were for 'I've forgotten my PIN' 🙄) I thought I *really* need to make this phone call to the opticians too.. so called and booked an appointment for Sunday. (I just said I needed to book to get my glasses looked at as they hurt me! - I didn't actually need to explain the confusion I'd had with emails etc)

So today...  I was tired and my brain felt full before we even went anywhere. I was also feeling agitated as I'd spent a fair bit of money on my glasses and didn't want to just be fobbed off. Plus I also had to return a pair of the shoes as the sole was awful - slippery and felt like polystyrene. (And no, I didn't know why my son didn't realise that in the shop?!) 

Dave drove and we managed to get to Kingston and into the car park fine, down a lift and to sports direct reasonably ok. (Although why a few plants in a large wooden planter in the middle of a concrete jungle had 'green spaces' on them was a little too much woke bullshit for my liking! 😁)

Dave couldn't see a pair of shoes he wanted either so we stood in the queue at the till, only to realise when I started looking around that there was a sign above us saying 'refunds upstairs' which we hadn't seen as had entered the queue from the side of the shop. 

Really helpful! 

 

So after waiting a few minutes for it to arrive, we get in the lift to see the shop has 3 floors, no label on the buttons as to which of the other floors is the refund area. 🙄 So Dave said "go to the top floor and make our way down" as it's easier walking down the stairs than up.

Level 3 was only a small area, with boxes piled outside the lift and in the walkways. Not only completely disability unfriendly, but actually dangerous. Not even a staff member in sight to move them. 

So down one flight of stairs, I have to super hold on the rails when the stairs turn corners, have odd lighting coming through them or stripes or patterns on the flooring, otherwise it sends my balance off. Plus, if I can't easily distinguish the step edge, I have to really take it slowly.

But on floor 2 we could vaguely see a till area so went to the other end of the shop... Yes, refunds! Although we instead got a credit voucher as they don't do actual refunds. Even the guy on the till agreed it's silly they say 'refunds upstairs' but not stating on which floor level.

Just going in this one shop and when crossing the road outside I am already feeling I need to double check for traffic as I'm feeling a bit unbalanced, ungrounded and might have missed something. 

So off to the opticians... But today my coordination wasn't playing ball and it was much tougher to try and avoid people walking the other way, or the cyclists that think it's fine to still cycle at speed on what (I assume?) was a cycle area too. (Although there were no visible signs that it was a shared cycle path - and the whole area is all paved in a similar way. These shared pedestrian/cycle lanes I hate and would avoid if I could) Even seeing a cyclist coming towards me is unbalancing, and I have to all but stop still so I don't wobble in their way as they pass. The faster they are, the more I feel like I'm going to wobble into them as I can't react in time.

The opticians appointment was fine, she heated the glasses to mold them slightly differently, so I hope they will no longer hurt my nose.🙏

She suggested we could wander round Kingston a bit and come back later if I felt they were still not right... But I replied "No, I need to go home". That was enough.

We walked back to the car park to find that the lift in the entrance we had used no longer has a ticket machine to pay, so we walked to another set of stairs, to find the ticket machine had gone from there too! To go to the third area and find they now only accept card payments, not cash, and 1 hour's parking costs £2! (No wonder people don't shop in stores anymore.)

The one flight of stairs to the next car level has a raised area on the floor at the top, I managed to hit it with my toes rather than trip up it, then the water laying on the car park floor was reflecting badly in the lighting above and rippling and flashing in my eyes as I was walking. I have to look the other way to stop it throwing me off balance. Again when going down the circular ramp of the exit I need to look down as my brain is not able to process the movement and speed of the car correctly.

If I was tired when I left home, I was certainly tired when I came home. I opened a packet of biscuits to have with a drink, put one on the side while I put the biscuit tin away, then promptly knocked it into the dogs (raw) food bowl.

That sort of sums my day up!

I'm exhausted and it's not yet lunch time. 

 

 

Brain Fog, Fatigue and Frustration

When I was in my 20s, the only time I felt exhausted after doing basic daily chores was if I was ill with flu or similar, or struggling with depression that took all my energy out of me. And as that included looking after 3 children under 6 at one point, one at school, one at nursery and a baby - it was pretty damn tiring. But I was back at the supermarket when baby no 3 was just days old with the other 2 in tow. I just kept going and got on with it.

In 2008, while in my early 30s, I got diagnosed with Chronic Fatigue Syndrome. I don't know if it was the added stress of a 4th pregnancy and child, trying to look after 4 kids who were always at different schools whilst I had no car during the day- which involved a timetable and a lot of walking, or the fact my anxiety and depression had never been addressed and my childhood and teenage traumas were catching up with me? Whatever the cause, I was often needing a rest, although I still did early mornings for schools, football early at weekends and all the shopping, meals, housework etc as well as helping Dave with our part time work from home business. 

 

By my late 30s I was struggling more, Dave was by then working from home most of the time and so cooked some of our dinners, but as various health issues appeared, I often felt run down or with a sore throat etc. So, I conserved my energy in only doing one tiring thing a day, changed my diet, took some homeopathy and supplements and I felt things slowly started improving.

 

For a while at least! Until in 2015 I just couldn't cope and wasn't able to do any extra work for Dave.  Even sitting on the PC doing simple data entry made me tired and stressed. He told me to stop and rest myself. 2016 was when I found out about the Hemangioblastoma in my cerebellum. 

 

Especially as the neurosurgeon thought my tumour had been there for years, 

if not decades, it might have explained a lot... 🤔

 

Those first few months after surgery were interesting... I was tired after walking to the garden at one point. Had to make sure I got everything I needed before I climbed the stairs. I still remember feeling happy I finally could walk my dog in the park alone after 3 months! In total, it's a 15 minute walk.

I have mentioned the fatigue a few times in the immediate years after, as well as the reality and understanding of what neurofatigue or brain fog actually meant to me here.

 

Roll on 6 years after I first really noticed I had something major going on with my body (I first saw the Dr's in January 2016, it took until April for a diagnosis) And yes, the fatigue is better and not as frequent, but it certainly hasn't gone either

I have managed to do things such as spend a couple of days landscaping the garden, or moving flowerpots and items around while re-potting plants, painting the lounge walls and redecorating for a week. However, each time I do something more major by the time the second day is ending, I am too tired to even think about cooking, or almost eating at some points. I struggle to find even the simplest words for either someone to help me with something such as help move some shelves, or to explain a task such as the dishwasher needs to go on. I often end up all but crying from tiredness and the frustration of being so exhausted from just doing what many could do easily. I need to go to bed at 9pm and just can't move anywhere. Plus I am certainly tired after, often for several days.

Last week I had a head cold, then my husband a flu type illness these last few days, and although he's not asked me too do much, a mix of me still feeling snotty, him fidgeting at night and so I'm waking up, plus having to more chores as he can't do them, and I'm exhausted again. I've fallen asleep in the day several times, gone to bed in the day as I cant think, even more. 

 

I have had a few days where my head feels like it's made of cotton wool that's simultaneously being pulled tight around the outside. My scar area aching and even the feeling of 'the wooden plank' down my head and neck comes back. Unable to think what I want to say easily, then saying the wrong words when I do. My vision is awful and my reactions slow and dulled. 

 

To everyone else this is what you feel like when you've got flu, or been on the piss all weekend (or Christmas!) ...to me it's just when I'm tired. Yes I don't feel like this every day, but frequently enough to say I have fatigue.

 

Not after doing something extremely draining, not after a really big emotional event... just a small daily task or event that has been a bit tougher than average, often one where you think it shouldn't really cause an issue.

 

Actually, talking about events, it was our sons wedding in November. It all went brilliantly and I enjoyed the day, albeit I was wanting to sit down alone by 6pm as I felt so tired! I could feel I was starting to say things that were a bit weird and didn't want to explain to every last stranger:

"Oh hey, sorry I'm talking odd, I'm not drunk,

 I just had a brain tumour" 

 

Sometimes it's easier to just let them think I might have had a few! 😬

 

I had to leave a bit early at just before 11pm as I could feel it was fully getting too much. But the next day... I went out in the car about 10.30 to get some bread. I could barely think. My head felt like mush, it almost felt like my brain was vibrating from the fact it didn't want to be working yet. I felt a bit wobbly and totally not with it. My vision not working properly even with my glasses on. It was just awful, and all from emotional, rather than physical tiredness. I often think that is far worse.

 

 If my body is tired, a sleep helps. If my brain is tired, not much helps. 

 

I rested as much as I could that week, tried to get out in nature and all the things that help, but it still lasted about 10 days before I felt I didn't have brain fog and wanted to cry anymore.

One of the things that gets to me most is when others seem to think its a competition in who's the most tired. Like that's a competition I want to win!!😬 People who say they have insomnia often saying they are tired, but (often) can still get on with things. They can work, still do most things people take for granted. I can't seem to explain that when I'm tired, I need to go to bed and physically rest. I can sleep for 9 hours and still feel exhausted and unable to think.

 

I can't go out again without a rest, nor walk to the pub, or see a friend, or even do a hobby. I can't even paint if tired, I just spill or drop things everywhere and cannot judge distances or see enough to do what I want to do. I ruin the work I have previously done. I can just about write, as long as its the basics of what I am thinking at that point, something I can edit later when I have more brain power. But I still have to deal with the frustration of making writing legible or correcting each word when I type. If you see me cooking and all the objects going flying you would wonder how I don't hurt myself more often!

 

If I want to go out late in the evening I need to have at least a 45 minute sleep in the afternoon, although it often takes me another 45 minutes to fully wake up again after! Yet people see me that evening and say I look and seem well, not realising that going out was the only thing I could plan for that day. On the few occasions I have not been able to sleep beforehand, I either really struggle talking or coordinating myself that night, or am just far too tired to do anything or go out the next day. Once the neurofatigue has hit, I can't read a book or plan things, or do a task such as organising the food shopping, well not without doing much of it wrong.

 

Then there have been some times that I have been physically exhausted, such as after painting the house and I am tired, but feel fine the next day after a sleep. I think it's as I actually enjoy doing that, it doesn't overwhelm me and am not finding anything too emotionally tough. I do know its worse when there is too much visual and audio stimulation or I've been talking to people who I dont know well - those I dont feel I can talk to without judgement from. I can sometimes almost feel my brain going sideways inside me at this point. Its hard to predict, what conversations and events will be good for the soul or simply too much for my brain.

This winter, which has been tough in so many ways, I decided to take up doing a lot of crochet. I am on my second Granny Square blanket. 😊 Making a simple square at a time is not taxing and I don't have to remember a pattern or where I was. I simply make lots and sew them together after. As well as being a useful item, its also relaxing and therapeutic. Anyone want a blanket?! 😂 

 

 

Balance after Cerebellar Surgery

When I left my neurosurgeons office after my 12 month scan and follow up, I was told I was ‘back to normal’. Now I fully understood and was enormously grateful that I was classed as ‘normal’ by the hospital, my tumour was gone, I was not needing any further treatment, I didn’t even need to take any medication. Yet I certainly was not back to the same position I was prior to my surgery. Well prior to the time my symptoms of feeling ‘drunk’ and wobbly started!

Many a time since then I have had to pull myself together to go for a walk with the dog as I was having a wobbly day and felt I was somehow buzzing inside, been extra careful not to drop cups, glasses or knives when in the kitchen, carrying an item with a very conscious thought about doing so, felt anxiety as my balance was not right when shopping and I felt a bit 'spaced', had to actively think and control how I was walking over steps, wires, uneven ground or even work out how to manoeuvre round people who were ‘in my way’. Sometimes just using a public toilet felt like a challenge as to if anyone would notice anything or dealing with the horrid feeling of being dizzy and wobbly simply from walking in a zig-zagging queue at a resort or the train station.

Yet I had no choice but to get on with it, never really knowing if it was a mental fear causing the physical issue or the physical issue causing my mental anxiety, or a nice combination of both! 😬

Yet part of me still struggled with the feeling that no one 

really believed me. 

‘My tumour was out, I should be better by now and back to normal’. 

It was certainly an invisible issue. 

Often I don't think even my family knew anything...

Frequently the balance issues were combined with the fear the feeling would go on forever. Then if I had a few good days, even weeks, when it returned I worried what was going on? Was this again the sign that my tumour could be returning?!

If having a chunk of brain missing caused this, then why does no one seem to really care, or even mention I might still struggle?

I guess I accepted it rather frustratedly. (My husband would probably say I whined through it!!😂)  I knew it was ‘my new normal’, and knew doing anything even the smallest bit stressful made it worse. – I knew that, but some days it was very much tougher to accept than others.

Balance, coordination and feeling dizzy (or wobbly) has been one of the main issues on my Hemangioblastoma Facebook group, not surprisingly since the majority of us have had a tumour on their cerebellum! Yet much of the time others say they are much better since before surgery, the symptoms are mild, infrequent, worse with stress and they have also accepted their ‘new normal’.

But a couple of weeks ago, someone posted they were still having coordination problems while walking and feel dizzy nearly 2 years after surgery, and asked “Is this normal?”

These were the replies from others who also had a cerebellar Hemangioblastoma and subsequent surgery:

"Coming up a year since op for me, wore boots with a small heel on Saturday and that threw my gyro off a wee bit. 😁"

"I am 1-year post surgery this week and I still get very dizzy especially after looking up or bending down."

"Yes, I have too. I find that I have to think about and plan my walking. It is tiresome, but you just have to try to adjust to the 'normal' that is today. I walk on the beach and uneven terrain a lot in order to 'relearn' - not easy."

"I occasionally have balance issues. Not all of the time. My wife says that I always lean to the left. 3 years post-surgery."

"I'm with you. And it is disturbing. I have been fortunate to now see a Neurologist and neuro physio. Not miracle workers but they do understand and give appropriate exercises to me. Some days worse than others".

"It's a very hidden disability."

And even after many years, others still struggle at times:

"I also have coordination issues (I'm almost 12 years post-surgery.) Like others I have gotten better at learning what makes it better or worse. For the first 2-3 years I would be more prone to get dizzy when walking in supermarkets or in crowds with all the movement in my peripheral (not sure if that makes sense but that is the best I can describe it.) That has gotten much better over the years and now only seems to be worse when I am dehydrated, or things are moving really fast past me - so things like amusement park rides are completely out of the question.  I also get dizzy if I am laying on my back and looking straight up or move my head too quickly from side to side. I also have had to change to a small heel but mostly stick to flats just because I feel more stable in them. I also have noticed that my brain gets tired a lot more quickly than it used to, so the more work it has to do the more tired I get and the more off balance I feel. This Zoom fatigue is a real deal for me! All and all I have been very luck and blessed to have recovered as well as I have but still have my days that I struggle with the new normal."

"I had occasional problems for 14 years after my surgery. My cerebellum had been squeezed by the tumour and didn't fully return to its original shape. I could correct most missteps without anyone noticing but when I walk with someone for a distance, I probably bump into them once or twice."

"I had my surgery 15 years ago and, in that time, I got probably 97% of my balance back. It should keep getting better but I'm not sure how much is better balance and how much is my adapting to my imperfect balance. Biggest problems: If I walk with someone for more than about 200 feet, I will probably bump into them at least once. If I'm in the shower, turning my head with my eyes closed is disorienting and I've learned to touch one of the walls when I do that. Uneven surfaces can be difficult, especially if they are uneven due to snow or ice."

"I've not had any scans since the initial one post-surgery, but similarly can have the odd 'mis-step' (21 years on). My brain was also very squeezed due to the cyst, and I tend to just put these things down to 'being me'. 
I don't think there is a 'normal', just a new normal for you.

There are balance exercises that may help, as might walking with a stick. I know it can certainly give confidence.

I can still get dizzy if I have to move my head from side to side fast, or look up, and get a head over heels sensation if I lie straight back. So I'm just careful / know to avoid doing these things. After all this time, I tend to forget what's happened (re tumour) and have just adjusted my ways accordingly.

2 years is still pretty early on. I know you've done a lot if walking, so you're doing the right things. Time will help, both with healing and with the way you do things / coping strategies, which just become 'normal'.🙂"

My own reply was: 

“My walking is OK. Unless I need to move out the way of something or someone. Then I am likely to wobble into them! 😬

Dizziness varies, some days I don’t notice it, days like today I feel I am having to control myself with every single thing I do. Make a conscious effort to walk straight and not trip, I find walking backwards and forwards such as in these insane lockdown queues makes me feel awful, plus the anger of having to be controlled like sheep angers me immensely 🤨 I've certainly had a few days this week of thinking will this go on forever? 😢

The frequency of struggling has definitely reduced over time, but getting stressed or doing too much makes it worse again. I’m honestly not sure if it’s at a better level or not when it does return...?

I think it probably seems worse when I have been feeling better to struggle again, as my patience is less and I am more sensitive to feeling 'off' from past experience and not knowing the cause of its return😕

I understand that you are frustrated not knowing if it will get better, but I don’t think the neuro team can ever tell you... it’s so variable on so much.

I think the more we challenge it (by walking on rough ground, or by turning head as we walk) it can reconnect the brains neurons - which help. I had to do this most times I walked for months, even years, after surgery, to get my balance back so that my brain didn’t react wrongly each time I moved.

Plus, we need to find our limits. My symptoms are FAR worse when stressed, tired or I feel pressured or need to do something else that I find tough.

Also, if someone listens to me it helps me in that they know I am struggling and just that in itself often seems to reduce any issues, knowing I won’t be judged. The more I focus on the negative and get worried about it, the more it seems to multiply...

I have definitely had to change some things I used to enjoy though, art and crafts being the main one - I just don’t have the coordination in my hands now. 😢"

⇹⇹⇹

This week I challenged my balance by walking on the beach, yet feeling rather freed in the fact that walking on piles of stones isn't easy for anyone and enjoying the letting go in accepting the wobbling.

I have the gratitude and reassurance that my 4 year scan didn't show any issues. (apart from the known missing bits! 😬😄)

And from these comments from others, I've certainly been comforted that my "new normal" is indeed "normal" for when your cerebellum has had a tumour removed and been damaged.🎔

It may also help you to read my previous post 

10 Things My Doctor Didn’t Tell Me about the After Effects of Extracting a Benign Cerebellar Brain Tumour

 

 

 

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What Do I Wish Others Understood about the After Effects of Brain Surgery?

1. That my thought process takes longer. To process thoughts, to say things. 3 years later and I can still be talking to someone and only understand something they said fully a few seconds or minutes later!  (This is without my surgery touching near any of the speech areas of the brain.)

2. I cannot always instantly say a correct response. e.g. someone might say ‘Hello’ as they pass me as I walk the dog, yet I reply ‘Yes’

3. I randomly say wrong words. Often it is of something I am looking at, or a similar item (such as a washing machine and dishwasher) but sometimes it is fully random, and awkward!

4. My issues are not just ‘normal’ aging. Please do not say it is. I don’t know any other 45 year olds who struggle as I do, saying incorrect words or phrases more than their parents!

5. My memory struggles at times. I often only recall having read something previously a few minutes into reading it again, sometimes I forget entirely. I have a really hard time remembering things from around the time of my surgery.

6. When I am tired, all my side effects worsen, I start to wobble again, feel uncoordinated, say the wrong words, not be able to find words, feel blank or just cry from exhaustion. I struggle with the frustration alone, and at the back of my mind there is always the worry that things are getting worse again...

7. I worry about head pains (of which there are many) and like many others who have survived a Brain Tumour also have health anxiety. As already I have had experience with being severely ill and Dr’s telling me I was fine and imagining it…

8. The fatigue can be insane when I am tired. I had fatigue before when it felt like my body was exhausted, this is different - it feels like your brain has forgotten how to work as well. Sleep is the only option at this point.

9. That I know I keep going on about the symptoms and side effects, as they often feel constant and wrong. It’s hard to ignore them. (I wrote about the side effects here and here)

10. I need reminding and reassuring these side effects are OK. Yes, I often forget I have had this same pain every so often since surgery. I have to think back and remember a specific incident that I had several months earlier. E.g. I remember thinking the same last summer when I walked the dog when it was hot, or at the beach I went to 2 years ago. Please help me by reminding me of actual incidents and not just saying 'You're fine'.

                                                                           

11. I cannot deal with conflict or too many emotions. If family are arguing, then I just switch off. Same as I cannot think clearly if shocked or surprised by something. I literally feel blank. And cry!

12. I cannot manage too much stimulation, be it from lights, noise, movement or stresses. With this I often cannot keep talking on top as it’s the final amount to cause overload. I am not being grumpy.

13. I often crave peace. To listen to birds singing or waves crashing…and nothing else!

14. Also, people talking are worse than, even loud, music. A song is somehow one sound in my head, each voice a single thing, so a room full of people talking feels like overload and my head cannot cope any longer.

15. Some days are easier than others. Some I can get to a gig and be listening to loud music all evening. The next I can’t stand being in a small room of people or hearing a child screaming next door.

16. Too much of anything almost always leads to a day of fatigue after. I am not just being lazy.

17. I find it hard when I get tired as I can go from tired to exhausted far too quickly. Waking takes me far too long, It's almost always like I have been woken from a deep sleep.

18. I still struggle with my spacial awareness and movement. It is worse when I am tired, but even walking with other people going in the other direction towards me can be hard. I don’t feel I can move out the way quickly and that I walk wobbly when I do.

19. I often feel that I am wobbly and slightly dizzy. But it's inside and no one else can see.

20. I cannot multi task. I cannot cook dinner and talk, or do any task and do something else. It just doesn't happen any more.

21. My eyes have never been right since before surgery. I struggle to read books- something I used to love. I don't know if the tumour or the surgery caused issues or not, (according to the optometrists my eyes work fine 😑) but it's another feeling that I am not the same as 'before'.

22. Likewise with my hand control, my fingers curl and my hand is weak. I struggle to do some basic tasks, let alone the more complicated ones. It has stopped me doing hobbies I used to enjoy.

23. I get frustrated with dropping things, my clumsiness, my spelling, my typing, my speech, my constantly getting things wrong. Please don't belittle me by saying they don't matter. They do. They are frustrating!

24. I am still getting over the shock of surgery. My skull being opened. I read something a while ago about brain injury causing an injured spirit and it hit me so much I just cried with reality. My soul still needs to take time to heal.

25. I have not fully accepted that the 'old me' has changed, and am still getting used to the 'new me'. I try and focus on the positive aspects and all the lessons it has taught me and part of me is certainly happier with the new version. But sometimes I just wish I could have some of the old parts back too...









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