I feel like I am running terribly behind, …. ages ago I started a series of posts trying to explain the different ways that Mah Eeeds affects me and my family specifically but I have fallen waaay behind … and I know that there are other topics that I have not finished, but I just run out of time and energy and of course it is all a balancing act … so I am going to change tack a little and as so many people ask me so many questions and it can be very long winded trying to repeat myself (which is fine) I thought that I would start a new series on Frequently Asked Questions that I get, then I can write it once and then send people this way…
So ask away int he comments below or send me a message privately and I will try and answer as many as I can…
So the big one that people ask a lot is what a typical day looks like for me. Most people only see me in “public”, and so they only ever see me in the best space, and almost no one sees me on the days that I can’t even lift my head of the pillow… So here is what my days kind of look like in a nut shell…
Typical Week Day:
On a typical “healthy” week day I am home alone. My husband works quite long hours and the children have flown the coop, so it is just me and the dog (who is actually a wee person of course). I don’t have a lot of energy to spare so I need to pace myself, and years before I even got my official diagnosis I worked out that if I start my day too early then I crash by lunch time and there is nothing left. So for the past seven years or so I have officially (doctors recommendations) stayed in bed until 8am at the earliest, no matter how early I wake up. I have long ago stopped sleeping in as I wake up in so much pain, but if I stay in bed and do e-mails, catch up on my phone and “rest”, then I stay there as long as I possibly can with 8am being the minimum and with the plan that I can push it to as late as 9am… this means that I can last much longer in my day…
In a usual week I need to have at least two whole days in bed, but as I am so sore when I wake up a day in bed actually means getting out of bed at around 9, and then doing around 2 hours of gentle movement. In summer that means moving in the heated pool, in winter that means a few gentle chores or slow walking up and down the house while on the phone or doing something in my studio.
On the other three days I try and get out for a few hours. My psychologist worries that I will become too isolated which then leads to depression, so I have a small handful of amazing friends who live nearby and I try and see one or more of them twice a week and save the third outing for appointments of which there is a never ending list … grrr. Those friend outings are either purely social like once month BookClub, or practical where we get together to create which is very important for my heart and soul. I usually need to slot in some kind of shopping trip each week as well.
My husband has taken on the role of shopper now. It is just the two of us and he has never been a cook, but we are very spoilt to have some amazing food shopping near his work so he pops out at lunch to buy things to cook easily at home. He also shops for my medications and so on. But I still need to be the one to shop for some things …but I then try to make a nice outing of it with friends who can and don’t mind helping.
But the bottom line is that for most of 2 days and half of 3 days, it is bed for me. And bed means a number of things: on a good week it means writing my book or my blogs of which there are a number which I contribute to, corresponding with family and friends who I can no longer see but can catch up with on WhatsApp and Skype, and I spend quite a bit of time still running a few things like our community social club a lot of which I can do from home on the computer.
I can also do a lot of creating from bed! I think that people gat confused when I tell them that I make my own jewellery, that I am currently making my own tiles to mosaic my bathroom and front entrance, but I don’t think that they realise that I do it is small bits and that it takes a looooong time!
On a bad week my brain doesn’t work so well so I can’t do any computer work but I can still Skype or whatsapp and sometimes I can read which I am doing a lot of and am enjoying doing reviews on what I read. As well as writing my own book I am also now available to read manuscripts of some other writers to help them out which I really enjoy. So while as much as half my daylight life is in bed, I am never bored!
Typical Week-End Day:
Needing rest doesn’t care what day of the week it is and so the 8-9am getting up rule still applies. So the big difference about a weekend day really is that my husband is home …and so we have changed our lives around quite a lot to fit in with my schedule. We used to go to church on Sundays which started at 9am and we needed to be out the door by 8:15 as it was quite far away. But this year we have moved to a closer church which starts at 10am and that has made a massive difference. On Saturdays my husband loves to go for a long cycle in the morning so that also suits my schedule really well. We seem to be able to manage about 2-3 outings on the weekends which include dates, outings with friends (usually in homes), and visiting or having people over like we always have, as long as I can spend most of Saturday and half of Sunday in bed.
In a way the weekends aren’t that different to weekdays except that they are slightly busier and I learnt over a decade ago to never schedule a thing on Mondays so that I can recover from the weekends. So that still applies and I am usually finished by the end of the weekend. So the weekday “rules” apply to Mondays but it is always one of the days that I don’t leave the house.
I only cook extremely simple meals now and often get help cooking basic things in bulk and freezing. I probably cook (or should I say heat up …) only 2-3 times a week when we are at home and I have someone who comes in twice a week to do all the cleaning, washing, laundry etc. and someone once a week to tend to the garden.
My husband and I travel a LOT. And a lot of people tell me that we shouldn’t. But he has no choice right now (that is simply the nature of his job) and now that the children are no longer in the same country as us, it is just the two of us and we have always been a close knit team. I don’t go everywhere that he goes by a long shot but he earns a lot of air miles and so there are lots to take me with him when he is going somewhere interesting. The company that he works for are also a close knit team (I jokingly say that I am married to the company … but in a good way!) …and some of my favourite people in the world are his colleagues and their spouses. These trips have therefore become a integral part of our social life and support network, and for me to stay home for sometimes weeks on end with no company, no one to cook for me, and miss out on so much socially is hugely counter productive. A time will come when I am no longer able to travel and I will not ever be able to get these precious times back. …So we are making the most of it.
When he travels he obviously stays in hotels and the bookings are there whether he is with or without me, so it costs nothing to have me with him in the taxi from the airport, in his bed in the hotel etc. Years ago I learnt to feed myself easily and cheaply in hotel rooms without spending a fortune and I travel everywhere with my own kettle, tea, snacks, food, even cup and cutlery. I usually even travel with an egg cooker. My entire home routine so easily transfers to a hotel room and in fact I get way more rest when not at home where I am tempted to overdo things. My laptop, Kindle and phone all come with me as well as a few craft projects that are transferable.
My wheelchair comes with me everywhere I go so airports and customs and lines and queues are not too stressful for me in the same way that travel can be for most people. We are the first on every plane and the last off and there is someone to push me no matter what airport in the world we are in and all the stresses of finding bags, locating rental car offices and so on, are almost non-existant when you have someone pushing my wheelchair who knows the airport like the back of their hand and usually they take me all the way to our next transport.
It is the jet lag that wipes me and when there are lots of people who I know at the places that I visit then yes I can overdo it. Obviously when visiting family I totally over do it, and yes I pay the price, but a week in bed isn’t THAT much more than a “normal” week at home anyway, so for me it is worth the sacrifice.
A Bad Day:
A bad day can hit any time without warning, and it has no prejudice against week or weekend days, home or travel days. My life sounds so simple but it is extremely complicated with a very fine line between moving to keep my muscles strong and over doing it. I also have very weak blood vessels so my blood pressure can drop very fast. I need to keep up a high salt diet and I have so many allergies that eating is a mission. I need to keep my fluids up and my pain manageable (which sometimes is impossible). I can’t control my body temperature like other people can so I am often freezing which sends me into a tail spin, or over heat which sends me into a different kind of bad space.
But much of these are more easily managed by being prepared, having a schedule, having people around me who understand and can look out for me. If I go downhill too quickly I get such bad brain frog that I can’t really tell and so it is vitally important when other people notice that I am twitching or looking rather vacant, or even better before I get that bad they notice that I am standing (which I shouldn’t do for more than a minute or two) and MAKE me sit down or get me something to eat or drink.
If I wake up with something dislocated or I dislocate a hip in the middle of a “walk” like I did three days ago, I simply have to suck it up and as soon as I can, have a HOT bath and get into bed. I have hot baths every night to manage pain and spasming, and I regularly have wheat bags and a blanket with me.
I think that that pretty much covers my day to day life but please feel free to ask any questions about this or anything else …