Archive for the The Blogs By Jackie Category

Masquerade of Words up catch up blog, probably more of a ramble…. By Jackie

Posted in The Blogs By Jackie, Week 14: Coping on February 9, 2012 by Cookie Has A.S.
Trying to think where to start, Coping: coping on many levels.
There is the practical stuff, learning how to do everyday things by using other parts of your body for strength, eg when vacuuming using an upright machine, we usually push from our backs, but by using the thighs to push with, is much easier on our backs.
Always bend down by bending the knees (unlike me who bent down to pick up a bit of fluff while vacuuming, and didn’t use my knees and simply heard the crack as my back broke yet again)!
When making a bed always use the thighs as much as possible, to push the bed for example.
When organising your kitchen try to make sure that everything you use on a regular basis is in a cupboard you can reach easily, as you don’t want to be reaching/stretching any  more than you absolutely have to. Have ovens fitted in where you can use them with ease, and not have to hold a heavy dish and bend down to put it into the oven, or to lift out of it.
In the bathroom try to have handles you can use to hold onto while in the shower, especially good for getting out when you are all wet!!!! And a grip for getting out of a bath. You may not feel you need measures such as these yet, but the day will come when you may not find the essential, but probably find them to be useful.
Again in the kitchen think of the weight of cooking utensils, there are some fabulous cooking pots and casseroles around, but as well as being very expensive, they weight a ton, and that’s before there is any food  in them. This may seem very simplistic, but these things can be a real nuisance if you haven’t thought it through. It also really helps when you can do these things for yourself and  have to ask for help as infrequently as possible.
Then there is the whole question of how to make those around us as aware as possible to our situation. The problem, as we all know, is how to make people really understand what life is like. How one day we can be quite fine (or at least manage to appear to be!) and the next, after doing nothing ‘wrong’ we can be unable to carry on, unable to function without it being obvious to all. We try to convey to them about the nasty visitations we often get in the night, the one with the baseball bat, cricket bat,  truck…… but they find it rather difficult to comprehend. The fact that we can be totally battered, or run over by that truck!, or a shoulder just battered, or a knee, or a foot, lower back, neck, well you know the story. I keep saying that I think the basis is that most people consider illness to be something to get (catch.. whatever) it is diagnosed, treated, then you go through a period of recuperation, and Bobs your uncle! Our reality is we have lots of periods of being very unwell, eventually  it is diagnosed – usually years later – we receive treatment and then go into the occasional period of quiet. Sometimes the quiet times can last for years if you manage to get great meds organised (quiet meaning you can continue living a fairly normal life and coping) but then something comes along to stop you in your tracks, whether it’s a new place of pain, whether the meds just stop being so efficient and you need to start all over again to reassess your situation and try a new regime, whatever, but it means that their notion of us being ‘cured’ is shown yet again to be all wrong.
They seem to find it very difficult to accept there is no cure, that there is no overdoing it, doing the wrong thing for us. Yes we probably do more than we should when we can – just cause we can. It doesn’t happen often ok, so go easy on us!! But there is no guarantee doing ‘too much’’ will cause us exceptional pain, sometimes it does, sometimes it doesn’t, and you need to believe us when I say that you should try not to ‘accuse’ us if we end up paying for a full day out, a day full of housework etc. We have gone ahead and done a lot more than our normal after weighing it all up, and balancing up any possible payment against the sense of achievement we are able to enjoy now and then. To have behaved in a normal way!!! We give ourselves a row for doing too much on the various AS sites, but it is done tongue in cheek as we all understand the enjoyment of having the occasion high and low rather than never ending blandness.
Yesterday I was full of the cold feeling miserable with lots of aches etc and a bit fed up. I didn’t get up till later, didn’t have a shower and generally was just a misery, so today feeling a little better I had a lovely long hot shower, washed the hair, got dressed, even put on some red lippie just to cheer myself up. I couldn’t have done much more, but I did enough to feel the difference from the day before, and hopefully tomorrow might be even better , might even get outside!
We have to work with what we have on any given day. We will let you know, though if you are very observant you might find you can see the little signs to guide you into how to deal with us!.
I could ramble on a lot more, but my hands are grumbling now, despite my natty fingerless gloves, so I will finish now.

Self Esteem By Jackie

Posted in The Blogs By Jackie, Week 12: Self Esteem on September 26, 2011 by Cookie Has A.S.

I find this quite a difficult one, probably I think, because it is!

I can tell myself all the right things, gee myself up to go out, and feel great, but when I meet people, new or old, I can often be found to just quietly withdraw. Especially with a group of people, I find I just don’t feel confident in a crowd any longer. I do find myself feeling so out of the loop, boring, nothing to talk about and so on.

After spending my whole life working, suddenly because of my circumstances, my world has shrunk so much. While I will never miss the job, I do miss the mixing with people, the social side to working. I was mixing with all sorts of people, all sorts of ages and backgrounds. I chatted each day to all sorts of people, tenants, other departments, tradesmen. While these days I can go days with only seeing my OH briefly. Apart from that it’s me, the cats, the TV and the laptop. I am not too bad, one on one, as I like to think I am a good listener, but in a crowd, I pull on my invisibility cloak. Don’t get me wrong, I don’t feel I am inferior as such, I just have little to say, because of this small, shrinking world I now inhabit.

I  can  be walking around, say in the shopping centre, leaning on a trolley and looking in the windows, then see my reflection……..and it often will really knock the wind from my sails. I don’t mean that in a narcissistic way, just that I still think of myself as I was, 6 inches taller, a few stone lighter and with a straight spine. Even after all these years the reality can still take my breath away, and obviously affects my self-esteem. Any self-confidence I had mustered in order to get out, goes straight out the window! It can become such a catch 22 situation, the less you do it, the less you want to do it, the less you socialize, the more difficult it is. I can’t see an answer to this for me, as my circle gets ever smaller, so do the opportunities. However, I shall continue to strive to get out and about, to try and have a little more confidence, the poster below I feel is wholly appropriate to me and others in similar situations, but it is not easy, but then why should we expect to be?

Need By Jackie

Posted in The Blogs By Jackie, Week 11: Need on September 19, 2011 by Cookie Has A.S.
What do I need, I think in fairness this isn’t too complicated at all. All the basic stuff needed by us all, enough money to not have to worry too much each month, sufficient clothes to wear, food on the table ect ect.
Then the other stuff, I must have books around me, music to listen to, people to talk to(mainly on-line these days). When I can, I need to get out of the flat, to stretch my legs, to walk, to look in shops, smile at people, and feel like I am still part of the human race. Plus it is the only form of exercise I can do.
I also need a little help now and then, nothing major, but just sometimes, if those around me would simply think ahead a little. I do this when I am with my mum, I try to observe what she is doing, and often take over doing something I know she will have a difficult time doing, before she realises that I have done so.
No big fanfare LET ME HELP YOU, just quietly assisting her. I often need some help, and at times, if I am honest I actually really grudge having to ask for it. I wonder why no one has thought to themselves that what I am about to do will be difficult for me and so just take over quietly.
In fairness though, I think I am more attuned to this simply because of my own situation, and that is why I am able to do it with my mum. So a little subtle help, not stuffed down my throat, or ‘ I won’t bother as you will want to do it yourself,’ would be much appreciated.
A lot of that comes from the ‘not looking sick’ situation. If I looked pale and wan and in a chair or in a plaster or a bandage wrapped around my head, people would make more of an effort. I know when I am in the supermarket, holding onto the trolley, I can gaze at something on the top shelf, and I get no offers of help. If I walk from the trolley using my stick I find it easier to ask for help and people rarely look upset at being asked.
Probably also is the fact that having a chronic illness, people get used to thinking of you in one way and they don’t change that mind-set. They begin to accept that you rarely go out, so never ask, ect. You make your bed and find yourself stranded there!
I need to feel worthwhile and not just useless, nearly housebound, disabled boring person, because I don’t go out, doesn’t mean I might not like to, with a little assistance. But looking ok and the illness going on and on and on and on, being taken for granted sets in, invisibility sets in, and assumptions take root.
I need more of a life than I have. I need to feel alive, I know I am sliding into becoming the old woman with the cats and the books and the TV and that would be all too easy. I realise that mum is getting nearer to the stage when she will need more help, and I dread it, as does she. What use will I be then? But I will NEED to find strength and energy from somewhere as there is only us, no big family to lean on, or big circle of friends anymore.
I need to try to get as well as I can be, lose some weight to help with this endeavour, as mum would love to go to the USA one more time. Go to her favourite place, Scottsdale, and as I am at the moment I would be a real hindrance. You might think this is more of a ‘wish’ than a ‘need’, but we all ‘need’ something to strive for. Or we would just stay in bed!!
There is plenty that I want –  but that is another story!!

Blog for MOW – Symptoms of AS By Jackie

Posted in The Blogs By Jackie, Week 10: Symptoms on September 12, 2011 by Cookie Has A.S.

I could write down a list, how boring would that be? How long would that be? But that would achieve little. Those of us who have AS and have talked to others will have heard them all anyway.

There is also the fact that there are so many symptoms, and we are all so different, perhaps part of the reason for the problems in diagnosis? The main symptoms in common, I suggest, is the lower back pain, especially in the morning, and the extreme fatigue. Both hugely debilitating in our lives and walking like a pregnant duck while one hand holds the small of your back and the other clutches at the wall, is so not a good look! But after that we are all different, and we are different on a day to day basis, which again, I suggest, is why those closest to us find it hard sometimes to understand. They think they have it all figured out and know how to help them something else happens!

It can attack so many places in our body anytime, It can be anywhere front joints to eyes, from feet to neck, from hands to heart,and there is no consistency, no real pattern, there are many many parts of our bodies that can be affected and can hurt and ache and scream with the pain, but we have no idea or control of, when, or indeed, if, that will happen. We can go for years with a certain part of our body unaffected – say neck- and then suddenly find we can’t move it because of the muscle spasms that make us gasp, for weeks we can have physiotherapy, or hot/cold treatment, adjust medication, then one day it is gone! It might never return, it might return on a regular basis, it might just move in and stay put.

It is no wander that those close to us can become confused, but doctors should know better they are trained after all, right?

The rheumatologists have spent years studying diseases like AS right?

They will understand that we are not being troublesome, or awkward, or confused- it is the nature of the disease- right? Right

Social Gatherings By Jackie

Posted in The Blogs By Jackie, Week 09: Social Outings on September 5, 2011 by Cookie Has A.S.
Those two words are such a mine field social outings – I have a vague memory of cinema, of theatre, of parties…………
Let’s start at the beginning;
can we plan them? …….only if your friends truly do understand the problems and are prepared for possible last minute cancellations, so that’s when I usually think maybe easier not to bother than risk being a nuisance.
Decision made to make a date to go out, but before we can finalise the arrangements we need to know: how to get there, and home again. So we have to be certain that we can easily get a taxi to get home later, and is a bus possible to get there, or will that need to be a taxi too? All adds to the cost! Also adds to the fatigue if there is much travelling. If someone offers to pick you up, will they realise you need to get in a front seat and have plenty of leg room. Can’t bend and twist to get in back, and if someone in the back they had better have short legs, or maybe just not bother as being such a nuisance.
If like me, you have had to retire from working, then the cost of any outing is an important factor now. Taxis can add a huge amount, cinemas, theatres, are all expensive these days, so an outing which you may not even enjoy can make a considerable dent in your finances, maybe just not bother then.
When we get there, depending on where we are going, are we guaranteed a seat? Is it a seat we will be comfortable to sit in for the evening? Is it one we will be able to get out of with any degree of elegance? You can, of course then be thought of as stand offish if you manage to get a comfy seat and don’t mingle- I used to joke that I needed my throne so everyone could come to me! But then again maybe just not bother instead of being a nuisance.
Assuming we will have a drink, will it be in a glass we can drink from? I have fused neck and little movement so the glass is important – or just give me a straw!!  A champagne flute for example, is a nightmare….. So if it’s a party with everyone standing with a champagne flute and a plate with nibbles. I’d better not go just in case I am a nuisance.
What to wear? I don’t have  many “Dressy” clothes these days as I don’t go out, but depending on what the outing is for will dictate what to wear to be comfy, to allow for sitting for a long time, to allow for some inelegant getting out of chairs etc then again, maybe not bother in case I am a nuisance.
In fact my social life is made up of going to a shopping centre with my mum once or twice a week, depending on how I am and the weather. The shopping centre is all on one level and plenty of seats throughout. Also I can get a trolley as I go in and keep in though all the shops, so nothing to carry.
The other exciting excursions are medical ones, to doctor, to hospitals, and sometimes, like this week, 2 in one day!!
Then, the most regular social life I have is with my twitter and FB friends. I chat with some of them every day. I don’t have to worry about what I look like, what the seating is like, can I drink from the glass. This could be construed as being a bit  lazy, I agree, but as all my friends are working, and all have busy lives of their own, and as I find I am not good in being with a group of people these days, it is a life saver for me. 
I am here for people to visit, but that’s not a very exciting prospect when people have been working hard all week, and people just stop asking me out as I always refuse, however I could go visit them during the day, but they only have daytime at the weekend and they have busy lives. I also don’t have to rush around cleaning and tidying in preparation for visits, not that friends are critical, it’s me that knows what I would like to do, what I can’t do, what I always feel I have to apologise for. Of course if I run around doing what I think I can cope with there is always the chance that I will be so knackered I am not up to having them round.
In my bleakest days I feel all I do is sit, on my own, with cat (S) reading or watching TV, except going to the Gyle (shopping centre) and looking round M&S.  When I am in the house, I look around and see the shabbiness and it is depressing and I know I can’t do it myself, and I have no one to do it for me, if I pay for someone to do it for me, the money will not be made up again anytime soon due to my situation, so can I live with it or not, does it matter or not as rarely does anyone else see it.
 Is this living? Or is this just existing? My answer varies from day to day, right now, as I have been sitting here a while typing so my knuckles have swollen up, my back and neck are aching from sitting in the same position, in honesty I don’t know.

Sleep By Jackie

Posted in The Blogs By Jackie, Week 07: Sleep on August 22, 2011 by Cookie Has A.S.
Sleep, something there never seems to be enough of. Sleeping can be difficult for us as the pain can hinder peaceful sleep, or getting your aching joints into a comfortable position for any length of time, or exhaustion allows you to sleep – for a while. We have become used to the wee small hours when everyone else seems to be asleep but we have woken up with pain, or discomfort.
Do you lie there and hope sleep comes back, or do you get up and try to stretch, move, anything to help aid a degree of comfort so that when you go back to bed, so you might sleep? If you have someone else there, you have the added pressure of trying not to wake them too, if you are working you have the stress of knowing how wrung out you will feel the next day while trying to carry out your duties well.
Then there is the fatigue, it is such a debilitation part of AS, but when combined with lack of sleep can make it impossible to carry on – to do your job, to have a social life. I have to say that one of the most enjoyable parts of not working anymore is that when I wake up at 2 or 3 in the morning – it doesn’t matter!! I can get up – make a cuppa – settle with my book – with no worry. I remember lying awake, especially on a Sunday night, and watching the hours go by knowing I needed to sleep, and sometimes with no sleep, sometimes with an hour or 2, because of course the more you worry about it, the more difficult it becomes, and then having to try and function at work.….
Most people go through periods in their lives when they find sleep difficult, but for us, and others like us when fatigue is part to the disease; it is difficult to describe the intense bone weariness, the feeling of walking through treacle, both physically and mentally. Oh I am so jealous of those people who can cat nap, I have never ever been able to do that either, but I am expert at staying awake all night long……..

Weathering Storms By Jackie

Posted in The Blogs By Jackie, Week 06: Weathering The Storm on August 15, 2011 by Cookie Has A.S.
I love the idea of AS being likened to a storm, sometimes roaring and trying to knock you off your feet and flatten  you, at other times grumbling quietly in the back ground and you are just waiting and waiting and watching for it to spring to life, and then there is the calm………..
After so many years and so much fusing, I don’t have too many hurricanes these days, thank goodness, but the quiet grumbling can be every bit as unsettling. That is how I tend to be most of the time these days. Never mad swirling frightening storm, but just a grumble with the odd skirl, just enough to stop you from relaxing, but enough to make sure you don’t give up on the meds!!
I can remember well some of the bad storms, the screaming and crying with the pain of it all, wandering the house at night holding onto the wall as you are so tired of being so uncomfortable in bed and unable to sleep, and feeling like banging your head off the wall you are holding onto to get some release from it all. Trying to travel to get to the doctor and ending up crouching on the floor in the back of a cab as you couldn’t take the pain of feeling every pothole in the road. But you all know what I mean, you have all been there. You do toughen up and your pain threshold rises up. It has to.
But we come through it, there is no point in worrying about it, it doesn’t help. And we learn to zip our mouths when someone tells you they know how you feel as they hurt their back lifting something heavy……
We get better and better at dealing with it, we get better and better at hiding it, and better and better at living with it. We weather the storm and learn to enjoy the calm, be apprehensive about the quiet grumbling, but when the big one hits – well been there done that, we weather it, we get through it, till the next time.