It Was A Cold, Dark Midwinter Night…

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A cold, dark midwinter night

Actually, no, it wasn’t, it was a warm, clammy, near midsummer night, but you get what I mean.

As I type this, it is Sunday morning and the clock reads 02:13. I have just sat down with a cup of coffee and a chocolate caramel biscuit. I got up 10 minutes ago, having retired at 9.00 o’clock last night because I was so tired it was almost literally painful. Just a few hours earlier, FPR had commented on the fact that I had been more awake than on the previous two days. S*d’s Law has had a very busy week, this week.

I had my assessment for a Blue Disabled Parking Badge on Wednesday of this past week. I had been anxious leading up to the day of the assessment but adrenaline saw me through – probably too well. The Occupational Therapist I saw informed me that it will take about 14 days for the matrix to calculate whether or not I am entitled to a Badge.

I was a bit tired for the rest of the day, but not overly so: I suspect the adrenaline was still working its magic. However, Thursday and Friday were completely written off. In fact, on Thursday, I could barely keep my eyes open. I was so fatigued it was making me nauseous. I managed to crawl into bed at 8.30pm – and I mean ‘crawl’. The thought of having to climb the stairs almost had me in tears. Somehow I made it into bed whereupon I slept. In fact, apart from a ‘comfort’ visit, I didn’t wake until late.

Friday wasn’t quite as bad, but I wasn’t able to do much. I did manage to do a little food shopping and a few rows of knitting, but that was about it. Oh, and I stayed up late. When I say ‘late’, I mean later than the previous night!

On Saturday, I had an appointment with the chiropodist. I have reached the point where I am too stiff to be able to cut my toenails. I don’t want to ask FPR to do them for various reasons, not the least of which is his eyesight. I don’t want to say he is myopic because of the connotations of that word, but he does have very short sight. Anyway, I digress. I attended the appointment and returned home. I spent the day awake but doing little, apart from arranging my forthcoming journey to see my baby son and his partner. I didn’t feel particularly fatigued, but neither did I feel like doing much. After dinner, I knitted just three rows of a very small item that I have on my needles before becoming exhausted. I sat quietly, becoming more tired and feeling more unwell until I managed to make the decision to go to bed. [NB I have worded that sentence like that deliberately as it’s how it happened. It took an inordinate amount of mental energy to actually realise and then decide that I had to go to bed.]

S*d’s Law was also at work earlier in the week. Last Sunday evening I had planned to meet a friend at a film screening in Longsight and to give another friend a lift home afterwards. I had dovetailed my entire weekend to give me the best possible chance of not having to cancel and everything was going well… Then our next-door neighbours’ daughter decided to play with her karaoke machine: outside, about 15 feet from our living room window, from around 3.00pm to 7.00pm – when I needed to sleep! I could have cried. I hadn’t expected that I would need to sleep, although, when I realised that I did need to, I didn’t perceive it as a particular problem as I had plenty of time. However, given that the ‘performance’ had started and then continued until 7.00pm, it completely scuppered any chance I had of going out, as I needed to leave soon after 6.00. I was sorely disappointed, especially as it meant letting down two friends. I am so very lucky to have understanding friends but it doesn’t stop me feeling embarrassed and ashamed at having to let them down.

S*d’s Law and Fibromyalgia (and, of course ME/CFS, if I do have it) have a lot to answer for!

 

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Old Wives’ Tales

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Sydney Opera House from The Rocks

We’ve probably all heard an old wives’ tale or two, haven’t we? Do you remember, as a child, pulling a face only for your mother to say “you should be careful or the wind will change and your face will stay like that”? I must admit, I have never seen anyone whose face did actually stay like it!

I remember, many years ago, hearing or reading that each of us is most awake and active at the time of day when we were born. I can’t remember whether it was from a printed article, a TV or radio broadcast, or whether someone said it to me. I have no idea whether the idea has been looked at scientifically but I tend to think of it as a bit of an old wives tale. Anyway, that little gem found its own nook or cranny in my brain and slept there for years, just occasionally waking up and giving my mind a little nudge, before dozing off again.

This week, my pet snippet decided to poke its tiny head out. Just a quick “hello”, you understand.

I was born in the middle of the night, 3.10am actually, and there have been plenty of periods when I have been quite a night owl. The first such period I remember was when I was at primary school: for several weeks I would wake somewhere around 2.30 or 3.00am. I was wide awake and would go downstairs. I would get myself something to drink, and possibly a snack, then settle down comfortably in an armchair and read the daily paper. I remember my mother coming downstairs the first time this occurred, and asking me what I was doing. I simply said that I had woken up and was wide awake so had decided to sit downstairs and read the paper. As I wrote that it sounded rather precocious but it wasn’t meant to be: I was just answering her question. Well, she accepted that answer and went back to bed. And, just like that, the whole family accepted that I got up for a couple of hours during the night. As I said above, it went on for several weeks.

At various times in my life, I have gone through these periods of early morning activity. It may be more accurate to say that they happen in the middle of the night. As a teenager, one of my jobs at home was to do the ironing. My favourite time to do it was immediately after I had been out on a Saturday night. I would return home at something like midnight or 1.00am, entering through one of the bars in the pub we lived in. I would say ‘hi’ to everyone who was at that night’s lock-in, then go through to the living quarters and do the ironing. I would have the radio blasting out (we were well away from any houses) whilst ironing clothes, with the back door wide open. As I look back, I realise how unwise it was to have the back door, not just unlocked, but flung open. Ah, the folly of youth! Oh well, I wasn’t confronted by burglars, nor did I suffer anything worse than a few moths coming in because of the light. Obviously Fate didn’t feel very tempted by my actions!

Since retiring from work early, I have often noticed that I don’t feel like going to sleep at a ‘normal’ time. However, I don’t necessarily heed that inner voice but do go to bed at a reasonable time. Not this week, though. I began the week with a few days of moderate fatigue. After a couple of days I realised that, as the day turned to evening, the fatigue would begin to lift slowly. This meant that by late evening I was feeling I had some energy that could be used. I have been known to do vacuuming when I feel like this late at night – not this week, though. I am in the middle of a huge sorting and decluttering job so expended the energy on that task. (When I say ‘energy’ it is a relative term. Don’t imagine I am leaping about because you would be sorely disappointed at the reality!)

It is not easy to figure out how much of this week’s fatigue and energy peaks and troughs are due to Fibro. At a guess, I would say that they are part-Fibro and part-Old Wive’s Tale.

 

 

Back To Square One

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Faroe Islands, August 2016

It feels as though I have gone back in time – well, sort of.

Let me to take you back to 2014, before Fibromyalgia had appeared on my horizon. My mother had finally moved into the retirement complex that was her idea of Utopia. Leading up to the move, on the Monday evening she had graciously (hmm, my tongue was firmly in cheek for that particular statement!) granted me special dispensation to begin packing her clothing, shoes and possessions. This was a huge concession on her part as it meant she was going to have to live surrounded by boxes for, oh, three days. Sorry, do I sound bitter?

Come moving day, I organised the removal men whilst trying to finish the packing, clean the flat, deal with all those last minute things that crop up and answer the phone to her, seemingly every 10 minutes. And, it was a stinking hot day. I do not and have never coped well with hot weather. The following fortnight continued to be excessively hot, with wall-to-wall sunshine. I was getting up at 5 o’clock every morning so that I could try to clean the flat properly before the day became even hotter. During the day I would have to take my mother out so that she could buy lots of new stuff for her new home, then, come the evening, I would do more cleaning and unpacking. After two weeks of cleaning, unpacking, sorting and so on, I finished. Phew.

I went home and, within a couple of weeks, was hit by a chest infection. After several weeks of the myriad joys of a chest infection, and almost as many courses of antibiotics, I was still suffering chest pain. I also had pain in the thoracic region of my back, which I had not previously experienced with a chest infection. Not only that, but I was totally exhausted: I was sleeping for hours during the day, as well as through the night. After a month or so, the Amazing Dr. A diagnosed Fibromyalgia.

I spent most of September, October and November asleep. Not dozing in a chair, but asleep lying on the sofa. (I don’t like going to bed during the day unless I really have to.) And, now, I feel as though I am in a time warp as I seem to be sleeping an awful lot of the time. Groooaaaaannnnn. Actually, I probably haven’t been sleeping quite so much as in 2014, but the amount of sleep does seem to be increasing this week. I have been able to do less and less during the past few days.

Not very long ago, I was able to do quite a bit. Even on a bad day I would be knitting, sewing or on the internet during the time that my body needed to rest. Now, however, things have changed. I still knit, but can only do a few rows in any session. I can do a bit of hand sewing, but only for 20 or 30 minutes. But… I now spend quite a while doing nothing (apart, perhaps, from watching trashy television). It’s a sobering reality, how little I can do. I still hope that this level of fatigue is temporary, that this Fibro flare will calm down, but it’s becoming more difficult to believe it.

I am at a stage in life when I should be enjoying myself. I have few responsibilities or obligations and I don’t have to work. I should be seeing, doing and learning new and exciting things, going out with family and friends, living the life I dreamed of. I shouldn’t be falling asleep at the drop of a hat and struggling to make sense of simple things. ‘Snot fair! I don’t like it!

 

Quick Step, Anyone?

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My late mother, who was a lifelong dance-a-holic

I’m assuming that you are familiar with the “slow, slow, quick, quick, slow” of the ballroom dance called the Quick Step. Those instructions comprise one of my strongest memories of my childhood. My sister and I used to go to ballroom dancing lessons every week in a small hotel which had its own modestly-sized ballroom.

There’s not much chance of me doing the Quick Step at the moment. I’d be fine at the “slow” but the “quick” would be more of a problem. Well, I say a problem but, really, it would be missing completely. As you might guess, fatigue is being an absolute pain in the proverbial. Whilst we were on holiday I was pretty sure I would be hit by the post-adrenaline crash when we reached home. However, surprisingly, it didn’t quite happen like that. We arrived home last Saturday evening, and I was feeling just the usual weariness that comes after a long journey. On Sunday, I was a little tired, but nothing too awful. Come Monday morning, though, it was an entirely different story.

I was up and dressed at a reasonable hour (nowadays I often don’t dress until late morning). I was planning to go to meet a couple of friends, although I really didn’t feel much like it. I was very relieved to receive a text message from E saying that J was away and that if I still wanted to meet, she would get ready and see me half an hour later than originally planned. It gave me the perfect excuse to withdraw. That was important to me because I so often feel that I am letting them down when I have to cancel arrangements.

Rather than having a protracted text conversation I rang E to chat. Within a few minutes of ending the call I went to sleep… for several hours! And it feels as though I have been sleeping ever since.

I think this may have been my worst week of fatigue during my whole Fibro (and now also CFS) journey. I sleep for an hour or so after my first cup of coffee in the morning. When I waken I attend to a small task downstairs, planning to wash and dress immediately after, but the task wears me out and I collapse in a heap in the chair. Cue more sleep. I wake again and go upstairs (a huge effort, in itself) and force myself to deal with another small task in addition to washing and dressing. Fatigue rears its ugly head again so that I am feeling dreadful by the time I get downstairs. Oh, good, there’s my chair: I can collapse in another heap. Oh! I’ve fallen asleep again!

I think you get the picture.

There are things that I wanted to do this week and I haven’t managed any that needed me to be outside of the house. FPR and I went to see his mother one day but that was a mammoth struggle which took its toll the following day.

It has been difficult during the past few weeks to keep any sense of humour about things but I’m hoping that it will return soon. In the meantime, I have realised that I need to have a serious think about adapting the way I live my life to cope with the restrictions that fatigue is forcing upon me. It will have to include the craft activities that I do and may well mean some serious stash-busting will have to take place. I wonder where I can find some energy to deal with that? Ideas on a postcard, please.

 

 

A Change Is As Good…

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Transiting the Kiel Canal. 19 April 2018

FPR and I yesterday returned from a little holiday to the southern Baltic. We were on a cruise with a cruise line that we have travelled with several times. Due to my state of health, amongst other things, we had to change our plans for various parts of the trip. Initially I had been going to drive us to Essex (the ship was departing from Tilbury), parking my car at the new home of my Baby Son and his partner. However it became clear that for me to drive that distance would be very challenging so we decided to travel to Tilbury via public transport. And that’s where the problems began!

Access to the coach which was to take us to London was via a set of very steep steps. I had been finding walking increasingly difficult and labour intensive, during the days leading up to the holiday. Consequently, when I tried to board the coach, I could barely lift my foot off the ground, let alone pull myself up the steps. Eventually, with help, I managed to get up the steps but the incident shocked and disappointed me.

Over the next couple of days I struggled on. I was finding it challenging to walk aboard ship. My balance was shot to pieces, I had quite a bit of pain and I felt as though I had lost the ability to walk properly. It was all rather unnerving.

Last Sunday, FPR and I went ashore to explore the town where the ship had docked. The difficulties with walking still persisted and fatigue was being troublesome. I was resting at one end of the town square when FPR beckoned me. I set off at my snail’s pace but disaster struck. With FPR something like 80 or 100 yards ahead, I tripped and fell, bumping my head in the process. Luckily there were four passengers from our ship who witnessed my fall and rushed over to help, for which I was and am very grateful. I was not badly injured: just an interesting lump on my temple, followed by a bruise featuring some rather exotic colours!

The fall made me realise something very important which is to use a walking stick on days when walking is a problem. Certainly, after that day, if I went ashore at all, I used the walking stick that I had taken on holiday with me and it made walking, and keeping my balance, much easier. I didn’t use the stick on the ship as I seemed to be managing fairl well. However, I did use it whenever I went ashore.

You never know, I may even manage to use the stick now that I am home…

Watch this space.

 

A Lesson On Flatware

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North Cape at Midnight. June 2012

*News Update*

There is a problem with the Spoon Theory.

It’s a very useful analogy for the fatigue associated with Fibromyalgia but it doesn’t always work well. Sometimes there’s not as much result for each spoon as at other times.

I find that when I have fatigue, its effect on me varies. For example, sometimes I simply feel exhausted, whereas at other times I feel diabolically awful. The second type is what I’ve been feeling recently. It comes on after expending very little effort. Things I can do on “ordinary” fatigue days are far more draining on the “worse” fatigue days. It’s difficult to use spoons wisely when they have different values on the various types of fatigue days. This week, going upstairs has taken a huge amount of effort: I’ve really had to drag myself up, hanging on to the bannister. Actually, even rising from a chair has been a major undertaking. I have had to lean heavily on both arms, pushing on something solid, to get up out of a chair. Every time I moved it felt as though I had a second skin made of lead, and it took an awful lot of dragging around. Any tasks that I needed to carry out had to be broken down into minute sections to give me any chance of achieving them. Even going to the loo needed planning! We have a toilet on the ground floor which is accessed through the kitchen and utility room. I don’t normally use it, preferring to go upstairs to the bathroom. However, this week, upstairs has not been a viable option as I just haven’t had the strength to drag myself  there. Consequently, I’ve been taking the scenic route through our ground floor rooms. Given the proximity to, and the fact that one has to walk through, the kitchen, I would often stop and make coffee for FPR and me. Not much chance of that this week! It was a miracle if I managed to put water in the kettle and switch it on, let alone carry out all the elements involved in turning water into coffee. It really is difficult to comprehend, let alone explain to another, how much effort is needed to do ordinary, everyday things like brushing one’s teeth or getting dressed, when one is afflicted by the diabolically awful version of fatigue. Consequently, the spoon theory has its difficulties. I might need one spoon on Monday to attend to my ablutions and get dressed, but on Tuesday it might take two, or even three spoons to carry out those same tasks.

 

This week, everything has used at least twice as many spoons as usual, often three times as many. Just a basic knowledge of arithmetic is all you need to see that it is virtually impossible to carry out the most basic tasks when the spoons are being used up so quickly. And, unfortunately, you can’t just go to the nearest petrol station to fill up, like you can with a car. No, you have to stop and rest – and not just for a few minutes. This past week or so, I’ve been having to rest for at least an hour, but usually considerably longer, to build up enough reserves of energy to carry out the next minor task. Something along the lines of go to the loo, spend hours recovering, need the loo, go to the loo etc. Repeat ad nauseam. Leave spoons in the kitchen on your way through.

 

I’ve Had A Little Chat…

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The Library in Tromsø, Norway

This week I had a chat with the wonderful Dr A. I told him about the new symptoms that I am having and said that I was wondering I may have Chronic Fatigue Syndrome (CFS) as well as Fibromyalgia. He agreed that, in the light of the recurrent sore throat and swollen glands, it is likely that I have both conditions as they are often found in the same patient. We discussed the possibility of my taking medication but, as Pregabalin and Gabapentin are both primarily prescribed for pain, I said I would still rather hold them in reserve, for the time being. I know that I can change my mind at any time, which is reassuring. At the moment, I can cope with the pain and discomfort that I am having so it makes sense to hold those two big boys in reserve for when the pain starts firing on all cylinders.

I’m not sure how I feel about the dual diagnosis. On the one hand, I am disappointed to have CFS but, on the other hand, it isn’t a surprise, particularly in view of how troublesome the fatigue is being. Even with all the recent developments in my condition(s), I am still very fortunate. As I said above, I am coping with the pain whereas so many Fibro warriors are often floored by it. As usual, it’s the fatigue that pulls the rug out from under me. This week has been difficult as it seems that anything and everything that I do brings on the fatigue. It’s not just that I am weary and exhausted but that I feel so unwell with it. ‘Snot fair!

 

It’s A Little Bit Me…

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Handmade Mosaic Tile Borders. Morocco, 2012

Time for a touch of nostalgia, everyone. Today’s title is borrowed from this song by The Monkees. They were huge when I was young and impressionable. I used to enjoy hearing their songs and always thought Mike Nesmith was quite dishy. Oh gosh, that makes me feel old! Anyway, as I say, I borrowed part of the song title for this post.

It has been very quiet here, at Bossy Towers. Like much of the UK this week, we have had snow and low temperatures which have encouraged us to stay wrapped up warm and snug indoors – as if we needed any encouragement! The situation has suited me well during the past few days as energy levels have been low. Anything that I have managed to do has been for less than half an hour and, often only a few minutes. It’s been “do a little of this” then “a little of that”. In fact, for much of the time, I haven’t really been doing much at all. Life has certainly changed from when FPR would see me knitting, or sewing, and comment that I always seem to be doing something, always busy. I am hoping those days will return because, at the moment, I can’t even knit for more than a few rows before my oomph is oomphed out. Oh well, at least I can still knit… unless it’s something for me! That’s when the Fibro Fog kicks in, Big Style, but we’ll overlook that for the moment.

Just thought I would mention that Tinnitus is being a real pain at the moment. For the first time that I can remember, the tinnitus in my right ear actually interfered with my ability to hear. Usually I hear everything above the ever-present noise, but once or twice in the last couple of days, I have had real trouble working out if there was any external sound. Pah! Just get lost, tinnitus: I really am not interested in what you are trying to do.

It’s only a very short post, this week. My feet are getting cold and I have just spotted two microjoules of energy which I am going to grab and make full use of!

 

A Very Special Gift

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Bondi Beach (I think!). Summer 2013

Here in the UK the National Health Service has a vaccination programme each winter to protect certain vulnerable people from flu. I can’t remember which groups are included – and I’m too lazy to check it, at the moment – but I know that I am one of the people invited to have the flu jab because I have a chronic chest condition. It usually takes me a while to get around to having the jab, but I do always make sure that I take advantage of its availability. I think it is sensible to have vaccinations when they are available. In fact, in 2015 I heard that there was a Shingles vaccine available.

Now, my body is extremely reactive to stress. Over the years, stress has caused me to suffer prolonged periods with no voice – the problem was so bad that I began learning sign language so that I could communicate with my family without having to write everything down. (Have you ever tried losing your temper when you have to express that anger down on paper? T’ain’t easy, I can tell you!) Stress has also caused me to suffer excruciatingly crippling headaches – not migraine but most definitely as bad as migraine – and also to develop Irritable Bowel Syndrome, amongst other things. Oh, yes… and Fibromyalgia.

Anyway, back to the Shingles Vaccine. When I learnt about it I was under a huge and prolonged period of stress. I knew, as did my favourite GP, that I was likely to be susceptible to anything and everything when the stress dissipated, so I asked him if I might be given the Shingles vaccine. He agreed that it would be a good idea but, unfortunately there was no way that it could administered within the NHS as I was outside the qualifying criteria. I decided to pay privately for the vaccine and, even though it cost more than £100, I remain certain that it was a sensible thing for me to do.

As you can see, I am a believer in the use of vaccines and so, this winter, I had the flu vaccine, as usual.

During the past three weeks I have been in the company of some people who have been suffering from the nasty cough/cold/flu lurgy that has been touring the UK. Usually, I would steer well clear of those nasty germies, but it wasn’t quite as easy as usual. Consequently, I have been half-expecting to be struck down with a severe case of Fibro Flu. Cue this week.

On Tuesday I began to feel unwell: very unwell. I had severe pain in the thoracic region of my back and also in my chest, both of which are pretty reliable signs of a chest infection working itself up into a frenzy. I was boiling hot. Then I was freezing cold. Fatigue and tiredness were off the scale. I felt decidedly l-o-u-s-y. My favourite GP likes me to keep antibiotics at home so that I can start taking them as soon as a chest infection starts because, once the infection takes hold, it is an absolute whatsit to get rid of. However, this time, I didn’t start taking the antibiotics. Although I seemed to have almost all of the symptoms, I wasn’t completely convinced that I actually had an infection. I already had an appointment booked with my favourite GP for Wednesday afternoon and decided that I would wait until I saw him and ask him to take a listen to my chest. Wednesday came and in I trotted to see my favourite GP. He checked me out and said that my chest was completely clear. It wasn’t a chest infection! Hmmm. Peculiar…

It turns out that my symptoms were all courtesy of “the gift that keeps on giving” (to quote my friend, Anne). My Fibromyalgia has decided  to make me feel so lousy that it feels like flu. Isn’t that fun? You’re right. It’s not.

Fave GP and I discussed Fibro, symptoms and medication and agreed on the same conclusion i.e. there is little point in me taking any of the recognised medications for Fibro as they are all aimed at the pain, which is the least of my problems. Fave GP asked me which symptoms I have and I went blank. I just couldn’t think! Whilst I was trying to reply, I had to pause for a while, after which I told him that dizziness (which had been the reason for the pause) is one of my symptoms. I told him that I have a wide variety of symptoms but little pain, compared to other suffers, for which I am very grateful. Please be sure, fellow Fibro sufferers, that I am truly thankful that the pain I have appears slight in comparison to what seems to be the case for very many people who have Fibromyalgia.

In view of the discussion of symptoms with Fave GP, I have decided to try and add a page to this blog where I can note any symptoms that I have. So, watch this space – or should I say, watch the space next to this space?

 

A New Realisation

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An eye-catching sculpture seen on one of our holidays

Today there was almost an enforced continuation of the dearth of writing on this blog. My frustration levels are quite high this morning. I have done quite a bit of IT and internet jobs for others over the past fortnight or so but this morning could have done with someone to sort out my own IT problems. Instead, I have cheated: rather than struggling to sort out the tantrum that our MacBook is in the middle of having, I decided not to log in as myself but, rather, to pretend I am a guest. Grooooaaaaaannnnn.

The need for this capitulation is irritating but I simply cannot face any more frustration at the moment. I have had several weary days during the last couple of weeks or so which have been frustrating but have also brought with them a new realisation. When I’m having a bad Fibro Day due to fatigue and lethargy, it affects my physical abilities. I don’t mean the direct physical effect of the fatigue making it exhausting to move but, rather, that I can also feel a difference in my abilities from a physical perspective. As you may have guessed by now, I am finding it difficult to describe what I mean. I think I shall explaining from a different direction.

The bad days I’ve been having have not exactly been Fibro Fatigue Days. They have been more generalised than that. I have felt achey, lacklustre, a bit foggy, weary, sort of “unpolished’, as though all of me needs spring cleaning. That description also includes how my body has felt. I have felt very stiff and my mobility has been poor. Even when I have felt brighter, it has been an illusion. My ability to walk any distance has been severely restricted. I went out with Little Sis earlier in the week and could barely put one foot in front of the other. It was as though each of my limbs and my body were being held back by some physical restriction. It wasn’t fatigue in my usual sense. It was more that I felt the Fibro was making me unwell and so stopping me moving.

I hope that explanation is clearer and easier to understand because I just cannot think of another way to describe it, apart from being frustrating. Sometimes I would be sitting and feeling fairly OK but, as soon as I moved, I looked and felt severely impaired. It was as though I had aged 20 years in 20 seconds.

Hey! Where did all those birthdays go? Where are my 20 years of presents?

What do you mean by “Just because you feel older, it doesn’t mean you are older”? Hmph!

OK, well, what about all the birthday cakes? *smiles hopefully