The Other Choice

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Morocco. February 2012

Last time I said about having a choice to make and went on to write about Fibro Feet. Well, today I am writing about the other option that was in my mind at that time: Tinnitus.

I have had Tinnitus since my early 20s. I clearly remember the first time I recognised that I could have different sounds in each ear, at the same time. It was in the village of Smarden, in Kent, just as I was about to get out of the car. (Just a useless piece of information for you.)

Tinnitus has a been a feature of day-to-day living for most of my adult life. Occasionally it would be severe but then it would settle down again: annoying and sometimes rather too intrusive, but not actually causing any problems. However, since the onset of the Fibromyalgia, the tinnitus has worsened considerably. I’m not saying that the worsening is solely due to the Fibro as some of my medication mentions that Tinnitus can be a side effect, but I certainly believe that Fibro has contributed to the worsening of the condition. I am finding that, more and more, Tinnitus is interfering with my actual ability to hear and distinguish sounds. For quite a long time I have sometimes had to struggle to tell whether a noise is in the environment or just inside my head, but now I find that there are occasions when the noise in my head is so loud and intrusive that it obscures environmental sounds to some extent. The obscuration can range from very slight to almost complete. I don’t think it is affecting my ability to hear speech as that seems to be pretty good but, if FPR asks me is I can hear a certain sound, I can struggle to hear it. It’s not nice! And I don’t like it!

I know that many people with Tinnitus suffer far more than I. I am grateful that mine is not considerably worse and I feel deeply for the suffering that those people constantly live with. My complaint is not so much that I have Tinnitus, it’s that the effects of it are another thing about Fibro that eats away at my self esteem. Bits of me are being stolen by Fibro and other conditions that I have: my brain no longer works as efficiently as I have been used to, my ability to cope with stress is practically non-existent, my body doesn’t function as well and, now, my hearing is being impinged upon. It feels like I am losing being me, that I am being taken over by another being (Fibro). I don’t know but perhaps I am afraid that I will be so completely subsumed by Fibro that I won’t be me, I’ll just be Fibro living in my body.

I think that, probably, most people take their bodies and brains for granted. I certainly did. However, when that edifice starts to crumble, it can be a struggle to find who one is in the rubble. I am still searching.

 

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Which Way Shall I Go?

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My Big Sister

I am wondering which way to go, today. I’m spoilt for choice as I could go this way, or that. I am stuck between Scylla and Charibdis Charybdis (spelling mistake courtesy of FPR!). Caught between a rock and a hard place and trying to choose between the Devil and the deep blue sea. I’m weighing up all my options before I come down on one side or the other as, at the moment, I am sitting on the fence.

I need to make a decision.

Had you guessed that?

The decision concerns this blogpost but I shall continue as I am, for the moment.

When I go to bed I really like snuggling under the duvet. I especially like the winter because snuggling feels so cosy and warm, even though my nose is probably still cold. However, there is one problem with diving in bed and drawing the covers right up and around me: Fibro Feet.

Between about five to fifteen minutes after I settle in bed, my Fibro Feet switch on to maximum, which means that the covers have to be kept well away from my little tootsies. They are burning hot inside and it feels as though the skin is being scraped off with a rasp. In fact, that scraping feels so realistic that a picture of it happening comes into my mind. That, in itself, is unpleasant because, as those closest to me know, I am very squeamish. I really dislike blood and gore and the image that comes into my brain contains both of those.

Another sensation that begins is that of my feet being pinched by a strong metal clamp. It doesn’t feel as though they are being squashed, it has a very definite feel of being pinched. I wonder why it is that all the sensations and feelings connected with having Fibromyalgia and/or Chronic Fatigue Syndrome are all so unpleasant? The two conditions really should be told that it’s rather unkind to inflict all of that onto people who are having to cope with life encumbered by long-term illness.

The Fibro Feet don’t just attack when I am in bed, although they do consistently appear then. Their campaign against my poor plates of meat reignites at all sorts of times and in various places, but there doesn’t seem to be a regular pattern – except when I go to bed. It’s OK if I fall asleep immediately (feel free to snort with laughter at this point, if you wish), if not, they attack and they attack fast – and they ain’t takin’ any prisoners.

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!

 

I Wasn’t Expecting That!

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Scandinavian Architecture in Norway (I think)

I had to see one of the GPs in our health practice, this week. Unusually, it wasn’t the wonderful Dr A but another of the doctors to whom he had referred me for a particular problem. In connection with that problem, she and I talked about fatigue and Fibromyalgia in general. As we were nearing the end of the consultation, I asked her about sore throats. I mentioned that several times recently I had had a very sore throat, although it hadn’t developed beyond the soreness. I said I wondered if it might be to do with the Fibromyalgia as, about 20 years ago, I regularly used to get a sore throat and lose my voice, sometimes for a month or more, due to stress. Dr B said she wasn’t aware of it being a symptom of Fibro but, as Fibro can be reactive to stress, it may well be connected. Nothing more was said about it.

Later in the week, I was reading this page, which I had linked through to from another page on that website.

Now, I don’t tend to read much about Fibromyalgia as, early in my Fibro journey, I found that the information I was reading was depressing me. I read about all sorts of symptoms that I didn’t have (at that stage, the only symptom I realised I had was fatigue – huge great bucketloads of it!) and they weren’t very nice! In fact, I’d go so far as to say that they looked a bit unfriendly, or even downright nasty! I made the decision there and then not to read about Fibro unless I began having a new symptom. If and when that happened, I could just do a quick check that it was, indeed, part of that joyful pakage otherwise known as Fibromyalgia, then not read any more. And that’s what I have done. Mind you, I hadn’t thought to look at whether a sore throat might be connected – that only occurred to me when I was talking with Dr B.

Oops, sorry, I went off at a bit of a tangent there.

As I said, I was reading that page later in the week and I saw that Sore Throat is listed as a symptom of Chronic Fatigue Syndrome (otherwise known as CFS or ME).

Ting-a-ling.

I looked through the list of symptoms again and saw “adrenal stress (low stress tolerance)”.

Definitely ting-a-ling.

My ability to cope with stress has all but disappeared. It had been pretty ropey before the Fibro diagnosis, but now it is very notable by its absence. I may have misconstrued the phrase ‘adrenal stress’ but I have made a note for myself to speak to the wonderful Dr A about it. I’m not sure if being given a diagnosis of CFS/ME would make any difference but, somehow, I think it would feel tidier to know, one way or the other. There would be a place to cross-reference things in my brain’s internal filing system.

I hadn’t expected that I CFS/ME might be involved. I think I had avoided even thinking about any possible connection as it seemed a bit of a cliché and I didn’t, and still don’t, want to be a cliché. I already feel like a bit of one because I am an older woman who “suffers with her nerves” and I certainly don’t want to add to that feeling. However being able to say either “Yes, it is” or “No, it isn’t” would allow me to know where I stand… or, rather, where I collapse in a heap – very elegantly, of course! Ha ha ha.

Hello? I’m Afraid I Can’t…

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Photograph taken by me. Location unknown.

Those closest to me will be familiar with the phrase that I have used for the title of this post. Unfortunately I am having to say it to more people and on more occasions that I would like. And I don’t like it! Not one bit!

I very well know that I am not the most reliable of people, I am certainly notorious for not being on time – some may even say ‘late’! However, as my journey along the route known as Fibromyalgia continues and becomes more challenging, it becomes ever more difficult to stick to arrangements that have been made. Frustratingly, cancellation is an ever more frequent event. Just last night, FPR and I were in our coats, ready to leave his mother’s house, when I had to take off mine off, lie down on the sofa and try to sleep. That most unwelcome guest, Monsieur F.A. Tigué, suddenly popped up out of nowhere. So inconsiderate! Wouldn’t you think that, seeing FPR and me with our shoes and coats on and hearing us making our farewells, that Monsieur F.A. Tigué would keep his nose out and let us get on with it? Oh, no! Hmph! In he runs, bold as brass, wielding his slow-motion. Double hmph!

As if that wasn’t sufficiently annoying, this very afternoon, that irritating old codger decided to call in at our home. Grrr. I went upstairs to get ready. (I had arranged to go to meet a new friend before leaving to meet another friend for a film showing.) I didn’t notice anything in particular as I mounted the stairs but it was hiding behind the bathroom door and jumped on me as I entered. Grrr, hmph and stink bombs. Actually, it wasn’t Monsieur F.A. Tigué but his younger brother, Exhaustion-Related Back Pain. They are not a nice family, you know. If I were you, I would steer well clear of them. Each of them has a particularly nasty mean streak.

One of the Fibro symptoms that I get is back pain in the thoracic area of my spine. Sometimes it occurs at the same time as mirror-image chest pain. At other times, the onset of the back pain is a warning that exhaustion is about to knock me for six. There is a different feel to these two types of back pain, so I can normally recognise which is coming to visit. When it’s the Exhaustion-Related Back Pain I know that within a very few minutes I will be laid low by both back pain and exhaustion. Exhaustion rather than fatigue. And so it was, this afternoon.

It was so disappointing. Apart from being disappointed for myself, it meant I had to let down the two friends plus the person who was arranging the showing of the film. It’s at times like these that I get really fed up with the Fibro. I don’t want to disappoint people. It makes me feel pathetic that I am laid low in this way, but I know that it would be dangerous for me to attempt to drive when I am exhausted or fatigued. One positive thing that does come from times like these is that I am reminded of how very lucky I am in that I have friends who care and understand when I have to cancel: friends who know that any time we make arrangements, there is a considerable risk of me having to cancel, but they are still prepared to take the chance on me.

So, to all of my family and friends I would like to say thank you for still wanting to inlude me in excusions and arrangements and for not giving me a hard time when I have to cancel. I really do appreciate it. Please, let’s keep trying because it’s good fun when I don’t have to cancel.

Mountaineering, anyone?

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Tierra del Fuego, 2014

As a child, I loved mountains. I had never actually seen one, in real life, but I loved them. My dream was to visit Switzerland, the land of mountains. In my very limited knowledge of the world and its geography, Switzerland = the Alps, ergo Switzerland was the place to go to see mountains. In fact, I so loved mountains that my mother and my grandmother each gave me a framed picture of mountains for a birthday or Christmas. I still love mountains. When I say ‘mountains’, the picture in my mind is of high, rocky places, bare of vegetation, with steep, jagged profiles with some covering of snow and/or ice – the amount of snow and ice is unimportant. I love to gaze upon mountains: they have such a powerful presence which I find oddly fascinating and calming. I can be easily  mesmerised by them, by photographs of them. Uluru, previously known as Ayers Rock, has a similar effect. I don’t have much of a ‘bucket list’ but Uluru is most definitely at the top of it!

FPR has climbed quite a few mountains around the world. He’s thrown himself off one or two, as well. He doesn’t understand that I can be fascinated by mountains but not interested in climbing them. I think my lack of desire to climb them may be because I wouldn’t be able to see the mountain while I was climbing it – well, apart from the bit around where I was standing or climbing. I would be too close. I love the majesty of the mountain. However, that is changing somewhat.

I still love mountains and now, at my greatly advanced age (well, in the eyes of my two loving sons!) I am finally taking up moutaineering. It is a particular type of climbing that I am indulging in but, actually, it isn’t through choice. With any mountain there are several choices of how to move past it: go up it, go round it, go through it or, fly over it. Hmm… Yes… Well… That’s true of mountains like Everest, Aconcagua, the Matterhorn and so on, BUT… when the mountain is a set of high, steep steps those choices don’t apply. The single option, if you want or need to access the paradise which is only accessible by those same steps, is to go up them.

That’s where the mountaineering begins.

I have noticed in the past two or three weeks that my Fibro is changing considerably. My entire body has stiffened so much and become incredibly weak. I have never been physically strong or powerful. In fact, my baby son has teased for years because my wrists and hands are so weak! However, the weakness in my body has become very much more pronounced during these past few weeks. When I mount the stairs, at home, I have to pull myself up using the bannister. It is quite a nuisance as, if I was carrying anything upstairs I would hold it in my left hand, but I now need to hold our only bannister with that hand. I am finding that I can barely manage to carry the laundry basket upstairs because of the way I hold it. I need to find a new position or technique to hold it.

Returning to the mountaineering, last week I had to ascend and descend the same set of three (or four) very deep steps several times. It was quite a challenge. I do not use any mobility aids and there was no rail to hold onto so it really was like being faced with a mountain. When I first saw them, I froze. How on earth was I going to get up them? It’s not just the amount of energy that is needed, but also the way my balance is affecting me, plus the weakness and the stiffness of my body.  The steps were not particularly user-friendly. There wasn’t much depth, from front to back, to place one’s foot: the depth was in the risers. I think they would be challenging for many people. Oh, my goodness. I really wished I had had a walking stick with me. In fact, I am thinking that it might be wise to keep a walking stick in the car – just in case. Oh dear, I am feeling decidedly old and decrepit – definitely not like a mountaineer!

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