Tag Archives: Fibromyalgia

A world of fatigue

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These days I am living in a world of perpetual exhaustion, fatigue, tiredness – call it what you will. Symptoms go like this. Go to bed at a very reasonable hour, between 9 and 10pm. Try reading for a few minutes but give up due to inability to focus. Wake up around 7am, still unable to focus and feeling very sleepy. Negotiate with self and sometimes Mr Mason about what time I will get up. Should I continue resting or should I get up and try and energise myself that way? Today we negotiate 10am as a getting up time followed by shower and getting dressed. My body cries out to go back to bed. I find it very hard to read anything as it is so difficult to focus my eyes. I sometimes feel slightly inebriated so if you ever get a message from me which is a bit weird, put it down to this strange fatigue because I will have written it when only half awake. The feeling inebriated part is so ironic in that I have not had a drink in months. My medication makes that a no-no but I also don’t actually feel like having a drink so to not remember what I did or said the previous night is a bit galling, to say the least.

Having got myself ready for the day, we head off for Sainsbury’s for exciting things like bleach and smoke detector batteries. One battery failed the other night leaving Dog in a state of high anxiety. He either cannot bear the noise the detector makes when it tells you the battery is failing or he has been in a fire before as he trembles and cries and this state usually lasts around 24 hours. On the way round the supermarket, I find myself a boyfriend of around 80 who needs help finding the right kind of rice. I love having conversations like this in supermarkets. Mr Mason doesn’t pick anyone up but buys some beer to cheer himself up. This is short-lived as he leaves the pound coin in the shopping trolley. On arriving home, we find next door are having their windows cleaned. Hurray! This was not a job I was looking forward to and knew it would not be Mr Mason who went up the ladder. Actually, I didn’t think it would be me, either, as the windows are very high and I am so unsteady and accident-prone. We nab them and they come round straight away and spruce us up, front and back for £20 which is brilliant. Dog and Lark decide they love the window cleaners in the garden but once they are up their ladders, they only want to bark and growl at them to show how fierce they are. I hope my training to not bark only extends to when we are in the house. Sometime while the windows are being cleaned there is a huge bang which knocks out the internet temporarily and sets off alarms in the village. There are occasional bangs from a gas gun to scare birds away from nearby fields but this is much louder and apparently in the sky. Hopefully it will be on the news this evening. We live an exciting life.

So, back to the fatigue. I am obviously at my desk and typing but boy, it’s hard to keep my eyes open. My choices are quite limited. I really understand the benefits of exercise in terms of increasing energy but I feel I’ve done that with my Sainsbury’s trip and a little play in the garden with the dogs. So what should I do? Sit on the sofa and try to read (through unfocused eyes) or watch tv or go to bed and sleep? If I do either I miss a lot of the day and I don’t like to do that. I have tried drinking Diet Coke and coffee which is not decaffeinated (which would be my usual brand of choice) but nothing seems to work and tiredness combined with pain can leave me tetchy and irritable. Painkillers also make me more tired, obviously, but it’s hard to pinpoint the exact cause of the fatigue. Is it cancer, Kadcyla, Fibromyalgia or something else? Knowing the cause probably isn’t going to help as there clearly is no solution; I just have to get on with it and manage it. But when the sun is shining, I really like to be out pottering around the garden. Maybe I’ll just drag my reflexologist’s chair out under the apple tree and have a doze there. It sounds better than sitting inside with the tv.

And I heard a brilliant joke the other day which amused me and I will leave you with. There were 2 cats trying to cross a river. One cat was called One Two Three and the other cat was called Un Deux Trois. Which cat do you think successfully made the crossing? It was One Two Three because Un Deux Troix cat sank. Enjoy, courtesy of Mr Tozer!

The great Hula Hoop scandal and Mr Mason’s allergy

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This week I am off to a meeting at the LSE in London, my first proper trip on my own for ages. Strangely I feel a little anxious although I’ve travelled on trains and planes by myself many, many times. I suppose this time I feel vulnerable doing it on my own. I am very tired, I do get very unsteady on my feet and it’s sometimes very difficult even to keep my eyes open so I suppose my feelings are not surprising. Mr Mason gets up early with me and drives me to Boston station. On the way we see a schoolboy apparently waiting for the school bus. “Everything he’s got on is too big for him” Mr Mason observes. “Yes”, I say, “even his ears”. “He’ll grow into them” Mr Mason reassures me. We leave Alex and the boys at the house still working on the roof and chimney. Alex tells me proudly how he drinks 9 or 10 cans of full-fat Coke every day. This may explain his cheeky grin revealing black stumps. He really is a nice man, though. The train is on time and we get to Grantham and I have to change sides but luckily there is a lift. I have decided on the brave step of taking the tube which is something I haven’t done for months. Although it’s only 2 stops from Kings Cross to Holborn, a lovely man stands up to give me his seat without the need to whack or poke him with my stick. I know it’s a digression (and I am Queen of those) but we have experienced genuine kindness from some people since we moved. Don’t get me wrong; I don’t think Lincolnshire is filled with saintly people or that London is a den of thieves but 2 things happened recently which really touched us. Firstly, I have to be cryptic about this first story or the perpetrator would get into trouble. You will remember the trouble we had in having certain services fitted when we first moved in. Well, having Alex and his team on the roof meant that something was moved which meant something in the house didn’t work. The engineer who came had left his mobile number in case anything went wrong so we called him and he was with us within a couple of hours, fixing the problem. He told us that if it happened again, to ring him but that he was going on holiday the following week so if we had a problem then, ring the company directly but not to mention he had been round. We asked what we owed him. Nothing. He was just doing it in his own time because he wants things to be right and if we called the company they would charge us a minimum of £65 each time. So this is not a scam or money-making scheme. He doesn’t want money, he just wants to do a good job. He will do this for 3 months from the date he did the installation and then it’s over to the company. The second kind deed was when Mr Mason went to get petrol. There is a family-owned petrol station nearby who still insist on filling your car for you. Mr Mason asked for £40 worth and was chatting with the pump attendant when the attendant said “You did say ‘fill it up’, didn’t you?” Mr Mason said no but the attendant had only put in something like £43 worth of petrol. “That’s OK” said Mr Mason, quite happy to pay but the attendant said no, it was his mistake and he wouldn’t charge him more than £40. Seriously, we have gone back to the 1950s and, obviously, will continue to patronise this petrol station.

So, where was I? Arriving at Holborn I walked down to LSE where I was early for my meeting. I waited outside the room until the food and drink arrived and then went in and kicked the students out who had been eyeing our coffee and sandwiches. They left without me having to hit or poke them with my stick. It was really nice to see everyone and it somehow felt very different to the last meeting which was only in February. These meetings are known amongst my friends as the Hula Hoop meetings because we always have Hula Hoops. Ever since the first meeting when they were brought along as part of lunch. we have insisted on having them each time so one of the researchers goes into Iceland on her way to the station and picks up a couple of big bags. We have been having Jaffa Cakes (in individual packs) but after 4 years we are thinking of having something else but we’re just not sure what. I’m voting for Tunnock’s teacakes, personally.

Ms Brookes had picked up 2 kinds of Hula Hoops this time – the normal sort and the new low-calorie variety. It was a bold move and there were cries of derision as soon as they were put on the table. However, we are a bunch of researchers so need to investigate things. I stuck to the original type whilst Ms Brookes and Ms Collins tried the new version. We checked the calorie difference which looked quite good until we realised the new low-calorie version has just 15g per pack whilst the original has 24g per pack. Apart from the fact that they didn’t taste so good and, as someone said, tasted like something you wouldn’t buy again, the calorie difference is very small. Puft Hula Hoops have 482 calories per 100g whilst original Hula Hoops have 507 calories per 100g leaving us with a measly 25 calorie reduction. We decided it was an experiment we would not investigate further and I believe some may even have been left for the students.

Coming home is difficult. I simply find it incredibly hard to keep my eyes open. This drowsiness sems to be a perpetual problem at the moment, no matter how much I rest or sleep. I imagine it’s a consequence of the Kadcyla and Fibromyalgia having a little battle between themselves. I meet a nice woman on the train at Kings Cross who I help to find a seat and then find at Grantham she is also going to Boston where she will be working at Pilgrim Hospital. I feel a bit like a tour guide as I point out landmarks along the way and tell her of the good things she will find in Boston. I point out the fields of rape which are in full bloom and remarkably vibrant. She mis-hears and thinks I say ‘grape’ so when I tell her it will be made into oil, she is confused and asks why they aren’t making wine with it. Chatting with her is a good way to stay awake, though.

Arriving at Boston, Mr Mason is waiting which is lovely. The following day my Macmillan nurse comes to see me and is so helpful and thoughtful that I know I have found a gem. She has so many services she can tap into for us, including someone to help with the garden or ironing, and she realises I feel cold in the evening so arranges for a heated blanket to be sent to keep me warm while I snuggle on the sofa. She has contacts with the Marie Curie Fast Response team who are keen on hospital avoidance. Immediately I like the sound of this so she will refer me to them. She also knows where I can get a massage, reflexology or reiki and will send me all the details. She is just bursting with ideas and the only downside is when she has to ask The Question – what is your prognosis? I have gone from wanting to know to really, really not wanting to know. I am in a good place in all senses and don’t want to be told “Well, next year doesn’t look too good”. I just don’t want to know any more. I have run away from London and from cancer and it shouldn’t have any part in my life any more. I know this is illogical but it’s how I feel. The following day I am so tired I only get out of bed at 3pm and am then back in it at 9pm. I think my trip to London has kicked in and added to the sleepy mix.

Today the new cleaner, Jan, arrives telling us about her cousin, Ray Clements, and his cancer. She does a good job on the cleaning front, too. My heated blankets arrive and I finally settle down to blogging although there is a lot of time with me resting my head on my hand and shutting my eyes. Finally, this afternoon we have an appointment at the doctor’s for Mr Mason who has been suffering throat trouble for some time. Of course, it is me who keeps saying “Let’s make an appointment at the doctor’s” to which he always demurs. Finally I have a breakthrough (and control of the patient log-in service at our local GP’s) so today is the day. He cannot remember the name of the doctor. I tell him it is Dr Bumhead. He does not believe me. I say a certain way to find out is to go to the receptionist and say “Is my appointment with Dr Bumhead or another doctor?” What’s the worst that can happen? More demurring. He goes to see not-Dr-Bumhead and comes back beaming. He has an allergy, probably to Lincolnshire but certainly not a hint of an infection and has a spray to squirt up his  nose. I collect my ragtag bag of medicines and discover that instead of giving me slow-release morphine they have given me a small bottle of Oramorph. I will now have to make an appointment to show my GP the box the medicine comes in to make sure I am prescribed the correct medicine in future. Luckily I picked up a supply when I was in London last but the idea of the pain which would ensue without the correct medicine is just not worth thinking about.

So tomorrow we are off to see the potential oncologist at Pilrim Hospital. Fingers crossed she’s nice and knowledgeable, willing to debate and discuss my case with me before making decisions.If she is, she gets the bag of good Hula Hoops I’ve got secreted in my handbag. If not….well, it doesn’t bear thinking about.

And good luck to all those taking part in the Vogalonga this year, especially Wave Walkers and most especially my friend Mrs Bowden who is taking part so she can keep my seat warm for me!

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Friday the 13th

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Everyone knows how tiring and stressful moving home can be. I just want to add the weight of my voice to that. Oh, it is SO tiring and SO stressful. Even the most simple thing like getting electricty connected to the house for the day we move seems a trial. Our address does not exist. We are quite happy to stay with the company who currently supply us with electricity but they want to connect us to a house called Castle View when we will be Castle House. I don’t imagine the owners of Castle View would be too happy to wake up and find we have changed their electricity supplier. How can we get round this? We need either the number our house occupies in the road or the serial number of the electricity meter. Once again, our vendors are proving tricky to get hold of.

In the week we are due to exchange contracts, they go to ground and don’t respond to texts or emails. As they live in Saudi, telephone contact is not really going to happen. They give information about replacement windows which is, well, not correct shall we say, and this means they will have to provide an indemnity policy should the local authority decide to penalise us over this. They are not only uncontactable but seem to have forgotten to instruct their solicitors to exchange contracts once everything is ready. Cue rush of blood pressure and our buyers in tears. We suggest the buyers might like to come over at the weekend to ‘measure up’ so we can reassure them that we really are planning to move. They are distraught, their solicitors having told them that exchange will happen “tomorrow” for several days. We share complaints and they leave feeling reassured.

On Monday, at the point where we have decided WE will pay for the indemnity policy, our vendors resurface and with just 6 minutes to go before the end of the working day, we have exchanged contracts. A bottle of champagne is put into the fridge by Mr Mason and I delay taking pain medication as long as I can so I can enjoy a sip. I bite the bullet and arrange for Sky to supply us with tv, internet and phone, despite my better judgement. The following day we cancel our service with Virgin Media only to be told we will have to pay a disconnection charge of over £200. We have been with Virgin for many years and this seems wrong, especially as the ‘disconnection’ does not involve anyone physically doing anything like coming to the house. I speak to the Customer Services man who says if he could waive it he would but he can’t. He urges me to complain by writing a letter but I would rather use social media so I tweet and Facebook outlining my complaint. Within minutes I have a response and by the end of the day they have withdrawn the disconnection charge and apologised profusely.

It’s at this point that the fibromyalgia really seems to flare up, leaving me in more and more pain, making it difficult to get comfortable and leaving me very, very tired. It is difficult to stay awake past 8pm and I certainly don’t want to get up before 10am. My day is shrinking dramatically with so much to do. Nearly every plan I have to meet with friends before we go is postponed or cancelled. I really am finding it hard and, with such a short day, I still need a nap in the afternoon. My friend, Ms Marsden, often refers to me as Mrs Dormouse and I really think the dormouse is making a comeback. We are still sorting through the last few areas which haven’t been looked it. It’s hard to know what to do before the removal men come and what to leave for them to do. The moving and all its attendant needs are happening alongside the usual medical and hospital appointments. This week it is oncology, a CT scan (to check whether the current treatment is working – slightly scary) and chemotherapy.

The removal men start packing on Friday morning, the same day as chemo, and will then continue on Wednesday and Thursday next week, delivering half our posessions on Thursday and the final load on Friday. Yes, it’s Friday 13th. Why – do you want to make something of it?

Blow the wind southerly

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This blog is not for the faint-hearted. Its contents will never persuade anyone to give me work – certainly not after they read this post.

Mr Mason and I like to live dangerously. Well, just sometimes. Today is week 3 of our Mindfulness course and this week we are doing Mindful stretches. It’s the kind of scene you see in a good old fashioned sit-com. Lots of people lying on blankets on the floor stretching in a variety of poses. Some are lithe and supple, some are less so and therefore the rolling around is less attractive. There is also the problem of bringing the knees up to the chest. There is a palpable ripple of anxiety that goes around the room as the less flexible of us wonder whether there will be a telltale escape of gas. Having consumed just an apple on the way to the class, I wonder if it will be me and rarely have I squeezed the requisite muscles harder so as not to embarrass myself in front of a class full of the wealthy of Fulham together with a smattering of us cancer and ex-cancer lags. Luckily, no-one lets rip which is a huge relief. It could so easily have been Mr Mason. As a teenager I went to a yoga class with a friend. We were the lithe and supple ones then and the rest of the class were – well, probably in their thirties and upwards. During a bending move, one of the older ladies let out an enormous fart and my friend and I, together with the rest of the group, laughed. The difficulty came when the rest of the group stopped their polite giggle and we were still laughing, so much so that movement became impossible and we had tears of laughter running down our faces long after everyone else had gone back to the serious business of yoga. I believe we just left the class in the end and never went back.

Passing wind can be a fraught business. I was once in the ladies toilet at the Natural History Museum with my friend L (she of the plastic bag knickers) and, once in the cubicle, she farted loudly. On emerging, she asked me whether I thought it was rude to fart in a public toilet. I think the answer has to be no. If not in a toilet, then where? On a trip to Newcastle with her once, she also let rip loudly as we were walking along. She says she cannot help it but I can’t help feeling there is a sense of merriment about her flatulence and that she is perhaps more at ease with herself than many of us are. Before we were married, Mr Mason and I were shopping when I was overcome with that terrible urge we are all aware of (apart from my friend, L, obviously) and succumbed to it silently and deadly. It was so overwhelming I moved away, my eyes watering. Mr Mason, still in the days of viewing his bride-to-be as wholesome and attractive, glared menacingly at a young man who was also shopping at the same time. When we emerged, Mr Mason asked if I had smelled the terrible aroma. I admitted I had. He went on to say he had given the perpetrator a suitably disdainful look to let him know he knew he was the source of the terrible stench. It was many years before I could admit the perpetrator was myself and that I put it down to his Mum making me eat Smash (the dehydrated potato product that, reconstituted with water, tasted like I imagine cardboard tastes). The Smash also still had lumps in. I rest my case. Mr Mason’s godfather is extremely deaf and often lets rip, possibly congratulating himself in slipping one out silently. Unfortunately for him, the rest of us are all possessed of good hearing.

That evening, as we retire, I make my way into the bedroom to hear a girl saying “Look at her! Did you ever see a woman as ugly as that?” which quite upset me until I realised Radio 4 was on and it was a programme about The Twits. Mr Mason has not smuggled a small child in with the express purpose of upsetting me. What a relief. As I root through my box of medication to find the requisite pills to take, Mr Mason takes a sudden interest. In many respects, Mr Mason and Dog are as one in that they take interest in the noise of anything vaguely crinkly eg plastic packets, biscuit packets, crisp packets. They see them as a source of treats which, in this case, is not forthcoming for Mr Mason. They also have synchronised their bladders somehow which would surely make the basis for a good study. I turn out the light and lie in the darkness, knowing that sleep will be coming for me shortly, reflecting on what an entertaining thing flatulence is and that, old as I am, I will never cease to find it funny. Happily, I just can’t grow up.

Listening to raisins

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In an effort to bring peace and harmony to my troubled mind, I sign up for an 8 week course of Mindfulness. I am not sure what it will be like except it is akin to meditation and that seems the right direction for me to go in. I have probably mentioned this before in my blog but, with the state of my memory, I cannot be sure and even if I did mention it, I am sure I did not blog about the first session. Mr Mason also enrols and together we trot off to The Haven in Fulham. There are quite a few of us for the first session and I know one of the women who is leading the group so it’s nice to see a familiar face. I don’t go to The Haven very often. I know some people swear by it but I find it less friendly and not as welcoming as Maggie’s where I spent a large part of my cancer treatment just hanging out with other people. Maggie’s has a large kitchen table and kitchen area at its centre with a log burning stove for the really cold weather. This should come in handy if the expected heavy snowfall we are predicted materialises in November. But, as usual, I digress.

We take our shoes off, divest ourselves of coats and bags and sit around in a circle with our feet supported by wonderfully comfortable meditation cushions. I sit separately from Mr Mason and, for solidarity, the only other man in the group comes to sit next to him. We do introductions and a short introductory meditation and then we have a practical exercise to complete. When I see what it is I fear Mr Mason will have great difficulty with it. We are told we are to be given 3 objects which we are to study intently. The objects are raisins and first we look at them. We then choose one (and I already have a favourite) and sniff it. Then we listen to it. Now I have never listened to fruit in my life, nor any other kind of food if I am honest. Of course, there is the popping of corn, I suppose but I can’t think of any other food which makes a noise. So, we listen to our raisins and mine does make a crackling sound when it is rolled between my fingers. I cannot look at Mr Mason because I fear he will be having an apoplectic fit at being asked to listen to a raisin. Once we have listened, we put them in our mouths and roll them around. Again, I fear Mr Mason will just chew and swallow without doing the requisite rolling so I cannot glance in his direction. After rolling, we get to chew and finally swallow the raisin. All this has been done mindfully so that we pay close attention to what is happening in the moment and use all our senses when completing this exercise.

After we have finished this exercise, we discuss how it felt for each of us and I am relieved to find a great deal of humour within the group. I even confess to having a favourite raisin and no-one says this is weird. We practise a mindful body scan which is the exercise we will be practising every day. I find it challenging to keep my mind on the task but this is the same for everyone in the group and we are told that is OK, too, as long as we bring our minds back to the point we are supposed to be focusing attention on.

Once the group is finished, we all huddle into a small area to don shoes and coats en masse and then we are whisked away by the lift and out into the autumn air. I suggest to Mr Mason that we walk back to Hammersmith via North End Road market which is one of my favourites. We buy fruit, vegetables and meat and then stop for a coffee. It is a very contented day and I have the necessary energy to enjoy it. We have done our mindfulness practice, we have had our required exercise and we have bought some great food. Arriving home, Dog is ecstatic to see us, as usual. His welcome is always cheering, even as he gets under our feet and trips us up, it is impossible not to be infected by his pure joy which is perhaps the best ending to a good day.

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Bustin’ out all over

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Tuesday is the day I get to see my bust. I had a plaster cast made a few weeks ago and it has since gone to an artist to go wild with their creative juices and slap paint or whatever on it. I am grateful mine has not gone to Gilbert and George. During the day I feel tired. Beyond tired. I do my mindfulness practice mid-morning and fall asleep. I could sleep anywhere. In the afternoon I have a little nap, thinking this will help. It does not. I hurt in all kinds of places. The soles of my feet feel bruised so walking is painful. My back hurts and, given the choice, I would curl up on the sofa and not go out but I am determined to attend the private view of my cast along with at least 3 of my friends’. My friend Mo calls to confirm she is going with another friend, Margaret. It’s nice to have moral support as I don’t know what I will be faced with. She floats the idea of a meal afterwards in Brick Lane. It sounds lovely but it’s so long since I have been out in the evening that I’m just not sure if I can do it.

On leaving the tube station, we miss Brick Lane by a mile and walk past the end of it, totally in the wrong direction. I am feeling hot and in a lot of pain so this is not the right time to make a mistake. If I felt energetic or even pain-free, it would not be a problem but this evening is not one of those occasions. We walk back in the direction we have come from and cross the road to ask a community police officer where it is. He points across the road to the junction we have been standing at. Sigh. We walk down Brick Lane and are assaulted on all sides by people wanting us to eat in their restaurants. Every type of approach is tried, including “Do you want to eat in the worst restaurant in Brick Lane?” an offer which, like others, we refuse. Eventually we reach the Brick Lane Art Gallery which is bursting at the seams with people who are spilling out onto the pavement, drinking wine and beer and happily chatting. We make our way inside and see our two friends who have already arrived and point me in the direction of my cast. On the way I see Jane who organised the whole exhibition and made the casts. She looks happy and rightly so. The exhibition is brilliant and people are clearly enjoying it. It is so hot inside the gallery I am immediately a soggy, over-heated lump. My glasses steam up, just to make my joy complete. My cast is exquisite. In hues of pink and green, it is simply beautiful. As I am exclaiming over it, a young man approaches and asks if this is my cast. When I confirm it is, he tells me he is the artist who decorated it. Skev  has done a superb job and it is really good to meet the man who handled me!

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We meet up with other people we know who have also had themselves cast and Mr Mason takes lots of photos, many of them with me looking damp and slightly demented.

Eventually we wander out into the warm evening and make our way back down Brick Lane with Mo and Margaret. We are enticed into a curry house which is nice but feels a bit as though it’s lost its heart and is now a tourist attraction. I suspect there are many more authentic curry houses in the vicinity but the food is fine and the service is good. By this time I am seriously in pain and very, very tired so we agree to take a cab home as we all live in a similar area. It is so wonderful to be whisked off without having to slog our way to the tube and also good to have friends who just understand without making a fuss.

Once my bust has finished its tour, I will be able to have it back. I have no idea where I will put it but it will be a reminder that there are more adventures to be had post cancer diagnosis and that I will keep on having them for as long as I can.

Season of mists and fibro fingers

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When I wake up this morning, two things are different. Firstly, there is a lovely autumn mist curling its way around outer London which means Autumn has really arrived. The sun, which breaks through mid-morning is the kind that warms the skin but not the air. The second thing which is different is that I have a fibro finger. What is this? I hear you cry. The little finger on my right hand hurts. A lot. It hurts to the touch, it hurts when I bend it and before you say “Don’t bend it, then” it also hurts without either of these two things happening. Fibromyalgia is such a mystery. I go to bed on Sunday evening without any pain in my finger. I wake a couple of times during the night as the pain makes itself felt and by the time I wake finally, my finger is really hurting. I don’t use my little finger for many things – in fact, I can’t think of anything specific I use it for, but collectively it is quite useful. When I go to the shops today, the little finger makes it plain carrying anything is out of the question. It says it will only be used to hold up whimsically if I drink tea from a bone china cup. As I don’t drink tea, the offer is somewhat redundant. Gradually during the course of the morning my middle finger joins in. But the pain reminds me I have the results of a bone scan due this week. Never have I wished for damage from radiotherapy so much.

Dog and the psychotic cat try to distract me during the afternoon. Dog does a beautiful example of one of his yoga moves. It’s called the Stretch and Fart and he does it long and loud.  He has been known to startle himself with one of his own farts and manages to look shocked and reproachful at the same time. He could also give Captain Stinkypants a run for his money. The psychotic cat sits beside me on the arm of the sofa (I am on the sofa, not the sofa arm. That would be silly). I occasionally forget she is a psychotic cat and absentmindedly stroke her whereupon she bites me. The psychotic cat was rescued from a cavity wall in Putney. Sometimes she is so vile I think I might drive over there and put her back. In the end I turn on the tv and catch up with programmes I missed while we were away. Time is going so slowly this week and I feel we will never get to Wednesday when I hope to hear about my scan. Despite being outwardly calm, it breaks into my dreams and invades my subconscious. All I can think is ‘Roll on Wednesday’.

Sleep, where art thou?

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Sleep, where art thou? In my eyes, for sure. The lids that want to close, close, close. The eyes that blur and ache. You are not in my bed, not on the expensive memory foam mattress with additional box springs for extra comfort. You are not on the Egyptian cotton sheets, so soft and inviting. You are not beneath the summer-weight duck down duvet, so light yet cosy. You are not on the duck down pillows, so soft and yeidling to a tired head. You are not to be found on the firmer mattress of Master Mason’s bed, nor beneath an all-seasons duvet with a view of the night sky if I lie with my eyes open. But they want to close. My limbs hurt. The left side where I had surgery hurts. It hurts to lie on it as though it is bruised. My left arm has lymphoedema and aches, right down into my palm. My right arm is complaining, too, as it dragged a shopping trolley probably over-filled home yesterday as my left arm is banned from doing such things. Normally they would share the chores but the pulling, lifting and carrying is definitely right arm’s job these days.

Sleep is not in the first sleeping pill I take. It laughs in the face of my insomnia and sneers at my tossing and turning. An hour or so later I take another pill and retreat to Master Mason’s bed with my V-shaped pillow. I just want to SLEEP. Sometime in the night, Dog comes upstairs to do what he likes best – stand on Master Mason’s bed and look out of the window to see if any infringements are taking place. He is sometimes known as Police Community Support Officer Dog. He takes his protection duties very seriously. He jumps onto the bed, all 26kg of him and walks towards the head when he realises I am in the bed and he has just committed a major faux pas. He high-tails it out of there and runs downstairs, embarrassed and contrite.

Sleep eventually reveals itself around 3am. It teases for a little while then allows me to settle my tired body comfortably on my V-shaped pillow and gradually fall asleep. It prods me awake a couple of times after that but I go back to sleep.

Apparently sleeplessness is very common after treatment for cancer. At a time when the body and, more importantly perhaps, the mind needs to heal itself, sleeping well becomes the unattainable. I am not one for taking sleeping tablets unless strictly necessary. I do not want to rely on drugs unless I have to. When talking to my GP a while ago about taking sleeping pills and the possibility of addiction she said, probably quite wisely, “At the moment that’s the least of your worries”.

So tonight, what do I do? Climb in confidently and wait to slip into a gentle sleep or take drugs beforehand? I don’t want sleeping to become a battleground. I need 9 hours a night and always have done so at the moment I’m feeling seriously sleep deprived. On nights I sleep well, I tend to continue well on into the following day which I don’t like. Time is precious. Conscious time, as well as sleep time.

I guess this is a battle which will go on for a while yet. And if anyone mentions the phrase ‘sleep hygiene’, I will name and shame you. Don’t get me started.

How alarming!

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Today I have to go to Southampton for a meeting. Luckily, it only involves 2 train journeys, a taxi with minimal walking in between and Mr Mason gives me a lift to the station. As we leave the house at 7.15 all is well and the sun is shining. We climb into the car and suddenly there is an alarm howling. We look at each other. It doesn’t sound like the car alarm and so Mr Mason switches on the ignition. Nothing. Or rather, the noise continues. Thinking it might help, he switches on the windscreen wipers which, strangely, does nothing to quell the noise. He switches the ignition off. We look at each other again. Is it coming from outside, I ask? Mr Mason gets out and gets back in again. “No”. I have to get to the station so I suggest he drives while I look in the manual. This is very much a girl thing to do, I have discovered. I cannot find anything under the index heading of ‘Noises’ nor under ‘Alarm’ which will fit the bill. We arrive at the station and I say goodbye. On getting out of the car, I can hear the alarm blasting away so tell him it is audible outside the car. Mr Mason is busy saying something else without opening the window and I have my train to catch so I wave goodbye and go to the platform. As I climb the stairs to cross the line, I can still hear the alarm and think it really is very noisy and either it is our car driving past or else there is an alarm going off in the station. An alarm going off in the station. I am in the station. I was in the car. The alarm is going off on me. I put my hand in the pocket of my jeans and there is my pedometer with the additional personal alarm which has been unexpectedly triggered. Ah. Not the car alarm, then. Mystery solved. On the train, I call him to ask if he had worked out what the noise was. “No. But it stopped when you got out” which is what he was saying through the window when he dropped me off. I explain it was my pedometer and am then glad to hear he did not take the car straight to the garage for them to dis-assemble it in order to find the now non-existent noise.

I generally enjoy train travel. I either read a book, look out of the window or listen to other people’s conversations. People watching and listening is a great thing to do and today’s journey is no exception. I learn quite quickly that of the two people sitting across the aisle from me and drinking an early afternoon glass of wine, the woman has a husband called Rob whose sister is a real menace and his boss is even worse. The sister, never named but always referred to as ‘she’, is a bit of a pain, by all accounts. They go to stay with her at a holiday home ‘she’ owns abroad and everything is fine until they get in the pool upon which she becomes a screaming banshee and yells and carries on about the mess they are making. It’s an outrage. The boss is always trying to catch him out and asking him about things that are never going to happen. I am not clear what Rob does but it sounds as though he is either a flight steward or a steward on board ship. Probably the former. He knows his stuff, though, and manages to make the boss look foolish with his ridiculous questions and safety scenario. When the tea trolley makes its way through the train they decide on another round of drinks and her complaints get louder and more outlandish. Just before we arrive back in Waterloo, she goes to the toilet and is gone some time. Coming back, we are treated to a blow-by-blow account of how she thought she was locked in the toilet. She says she is a simpleton and, having surprised someone else in the toilet before, made sure she locked the door when she went in but could then not fathom out how to unlock it. Luckily, she manages to convey all this before we pull into the station and they go on their way.

Other people’s conversations are wonderful, as is people watching. I wonder if someone is blogging about the woman who was emitting an alarm, apparently unconcerned?

Exhaustion is so tiring

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It’s true. Being tired is a most tiring and tiresome thing. Yesterday I watch a small part of a tv programme about being more responsible for monitoring your own health. Part of the documentary shows several older ladies who decide to make sure they walk 10,000 steps a day and who say they felt much better for it, more energetic etc etc. They even say it wasn’t that hard. This sounds good! I decide this will be me. I will banish my exhaustion by exercise, by walking 10,000 steps a day and be bright-eyed and glossy-haired with a spring in my step in no time. Did I ever tell you what an optimist I am?

This morning dawns bright and Mr Mason asks if I want to go out on a walk with him and Dog. Yes! I do! This is the start of the bright, energetic new me. I decide my aches, pains and exhaustion will disappear under the sun, be blown away on the breeze. It’s so simple. We set out and Dog walks nicely, not pulling and not stopping too often to sniff at something interesting. As he navigates pretty much by the smell of his own pee, it is quite an important part of his day. We get to a crossroads which is obviously of some signifigance to him and he just HAS to sniff and then pee. On a side note, I do wonder how much pee dogs actually contain. Dog has a bladder of amazing size and control. He has been known to pee continuously for up to 2 minutes and yet still find more to mark his route. Where does it all come from? But I digress. Pauses for sniffing and peeing make me more tired. Once momentum has been gained, it must be maintained or else I think I will stop and never move again. Eventually we get to the park and Dog is released from his lead and can run free with a look of bliss on his face. Periodically our offspring get obsessed with teaching Dog things. I taught him to bring his ball and to get off the sofa. Also, I believe, to sit. Ms Mason, who has since gone to live in Bangkok, so great is her embarrassment, once believed she had taught Dog to spell. This was on the basis that she would spell P-A-R-K rather than say the word. He responded to the tone of her voice and she was convinced he knew the spelling. When she started to call it ‘The Green Place’ instead, he responded to that in the same way. So, no spelling Dog, then. Before leaving for Thailand, she engaged in a campaign to teach Dog to roll over. As you will know from his photo, he is structurally unsuited to this task and we have not progressed beyond the ‘side’ command, whereupon he will lie in an awkward twisted shape in an effort to please us and be rewarded with a treat.

So, we get to the park, throw ball, tidy up after Dog and by the time we’ve gone through into the fields beyond, I am knackered. Beyond tired. We sit for a while before wandering slowly back with a stop on another bench before we leave. I am still very much focused on what might be and how good it would be to walk 10,000 steps and be all bright and bouncy. After getting home, we have lunch and then I say I am going to the shops to buy some fruit. Mr Mason doesn’t stop me. Damn. I head out and wonder if someone has stretched the road as it feels so much longer than usual. I don’t even have the heat to blame as it is quite cool so I am clearly Just Plain Exhausted. I walk to my favourite shop to find – horror of horrors! – that they have no cherries. This is just not on. I have eaten kilos of cherries this summer as they have been particularly good and to find my main supplier out of stock is just not good enough. I am a cherry addict and I need my fix. I have to go and sit down in a cafe and have a cold drink to recover from the shock and, to be honest, out and out tiredness. Once I have sat there for a while, sipping my drink and playing with my mobile, I heave myself up and go to Plan B shop. They have cherries of a lesser quality but better than nothing so I buy a bagful, throwing in some sultana grapes, limes and mint and coriander for good measure. I am thinking Mojito with the mint and limes with the golden rum I brought back from Oslo. I know, I am mixing my cocktails and my continents.

I make it home although each step feels heavier than the last and by the time I reach the front door, I could just weep. Mr Mason is on hand to bring me a cup of coffee and see me settled on the sofa. With normal tiredness, sitting or resting will improve how you feel. This doesn’t seem to work so well with Fibromyalgia and so by 5.30 I am asking if it is too early to put my pyjamas on. Luckily we are not the types who dress for dinner so pjs it is. The next question is – is it OK to drink a mojito when wearing pjs?