Sjogrens Awareness Month – Day 30

Day 30 – Nearly but not quite.

Well here we are at day 30. My aim was to blog every day this month for Sjogrens awareness, and as today’s title suggests I didn’t quite make it.

I managed more days than not, but couldn’t find the energy to do it every day. But that’s ok by me, because six years in I am used to the nearly but not quite life style that is now mine.

You see, with Sjogrens, Plans often have to change. Sometimes I have to cancel at the last minute, sometimes I have to leave early, or can’t get there on time. Sometimes the things I want to happen have to give way to other things.

In a couple of weeks we are going on holiday. I know, as I have shared with you during this month, that good things come with a price. Lately I have been doing a little bit too much. Now were I to list what I have been doing, it probably wouldn’t sound much, but it is too much for me. Eighteen months ago I was still hoding down a job, now even doing a little something every day leads to me saying I’ve done too much. It’s sad, but it’s true.

So, with the holiday in mind, I have tried to cut back this week. I will be doing the same next week and the week after. This is preparation, in the hope that, with a rest period in every day, I will be able to enjoy the holiday. When we come home I will again take time to rest and recover.

I hope during this month I have helped people to have some understanding of what it’s like to live with sjogrens. It’s not pleasant, but it’s doable. It’s not a bundle of laughs, but you can still enjoy life. It’s not part time, but it’s not a death sentence.

Can I say I am on top of it everyday? No! Nearly but not quite.

Can I say I never have down days? NO! Nearly but not quite.

Can I say I manage to do everything I want? No! I want to put nearly but that would be exaggerating a little. 😉

Can I say I fully understand it? No! Nearly but not quite. There always seems to be something new!

I will continue to blog, but it won’t be everyday. Thanks for sharing this month long walk with me.

Until next time x

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Sjogrens Awareness Month – day 27

Day 27 – Digestion

Sorry, this may be a bit TMI for some of you, but Sjogrens can affect your digestion.

Because my mouth is dry, the tubes leading to my stomach are also dry. It makes eating difficult at times, and I have a rather unhealthy relationship with food.

Some foods have become impossible these days. Anything in the slightest spicy, or flavoured burns my mouth. My tongue then feels swollen for hours afterwards. Other foods can still be eaten but they play what I call (I sound like Miranda’s mother) sjogrens Monopoly, i.e go directly to bowel, do not pass stomach, do not get digested! If it wasn’t so gross I could make it my party piece, Look I can poo strawberries! (I did warn you it was going to be TMI)

Then there are the foods that won’t budge. Now if this was always the same foods it would be easy, I would just avoid them, but it varies. Sometimes I can be fine with something, the next time it causes me grief. When the food doesn’t want to budge it just sits in my stomach, not being processed, until my stomach rejects it upwards.

I am trying to lose weight – this isn’t just a sjogrens thing , it’s a long term thing, but the meds don’t help. Sometimes I am successful, and I am working with a dietician. I had managed to lose two stone, but just lately it’s started to go on again. This just makes my relationship with food worse.  Very often it is just a case of eating what I can manage with the Sjogrens on that day.

I have got to the point where eating is no longer a pleasure. If I could give it up I would.

Now I know this isn’t my most positive blog, but there are some parts of Sjogrens that well, they just aren’t that positive. Not everyone with Sjogrens gets problems in this area, but many do. It is one of the ‘it’s so much more than dry eyes and a dry mouth’ parts.

I try not to let it get me down, after all, chocolate still goes down, so life’s not all bad. I’m quite matter of fact about it, and I still try to eat what I want. I know I am not the only one who gives in to something I know will make my mouth sore, but it’s worth it at that moment in time, because that is what you have to do to get by. If you didn’t  you would be really miserable and life is too short to be miserable.

The doctors have  done their bit in making sure it is nothing other than Sjogrens going on, by being so delightful as to use cameras , to quote star trek – to boldly go where no man has been before!!!! Cameras down, cameras up, I have seen myself inside out lol and the conclusion was that it is purely down to dear old Mr S.

Now if you have made it this far into this blog you have my admiration, I think I would have given up long ago, and I promise I will think of something lighter and more pleasant to say tomorrow. x

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Sjogrens Awareness month day 26

Day 26 – a few hours late (sorry but Ipad problems)
Restore to factory settings.

Today I went to the apple shop with my ipad for an appointment with someone at the Genius bar.

We talked about the problems my Ipad is having – it’s slow, it freezes, it needs restarting three or four times a day, it puts capitals where I don’t want them, it doesn’t always print what I am typing etc etc

He looked at it, and within a couple of minutes was saying, ‘Yes I can see why you are frustrated with it!’

The only option, he said, was to back everything up on my icloud, and then to restore it to factory settings. A very scary prospect for me!

But then I got to thinking, Imagine if I could take my body to the genius bar, let a doctor actually experience the problems I have. It wouldn’t take long for them to say, ‘Yes, it needs restoring to factory settings!’

Imagine if they could do that. Rebuild me – like the six million dollar man (lol). Just plug me into a computer, let it back up the important stuff, like my memories, abilities, emotions, knowledge. And then reboot!

Delete the dry eyes, the dry mouth, the digestion problems, the creaky, painful joints, the chronic fatigue, the fibro burn, the memory fogs, and all the other delights Mr S has forced upon me.

It’s a very nice dream, and even if it was scary I would definitely go for it.

Unfortunately, however wonderful my rheumy is (and I think I have mentioned once or twice just how wonderful he is) he can’t reboot me. I am stuck with Mr S for the rest of my life. I can’t hand it over to anyone for them to experience it, and I wouldn’t want anyone else to experience it (with a few notable exceptions – all of whom are politicians!!!) because it is horrible.

One day I will be rebooted, when I get to heaven. I look forward to it, but I don’t want it to be for a very long time. Even with Mr S, I love life. It may have it’s limitations these days, but it is mine, and I enjoy it.

I didn’t give my Ipad the choice, I pressed the button, and now we wait to see how well it works after it’s rebirth. Thankfully for myself I do have the choice, no-one is suggesting I’m not worth keeping.

I dream of them finding a cure, though I know it’s not likely to be in my lifetime, I take the tablets (33 a day) to keep me going, and I plod on.

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Sjogrens Awareness Month – Day 25(ii)

Sjogrens Awareness Month – Day 25(ii).

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Sjogrens Awareness Month – Day 25(ii)

Day 25 – for the second time.

Just realised that I posted yesterday as day 25 when it was in fact day 24 – but as I have told you all about brain fog I expect you to understand. So here is the real day 25 blog

Day 25 – pushing forward.

Having a chronic illness affects every part of your life. It can bring depression, it can rob you of your confidence, it can alter your life plans, and your day to day plans.

Today I have had a rest day. I have stayed in bed, but I have been writing in short bursts. I am on my third novel, but as of yet have no publishing deal. Mainly this is because when I get to the point of sending it to agents I go into some sort of panic.

I used to be a confident person, a strong person, but now I hesitate a lot. So it is taking an enormous effort on my part to push forward with a childhood dream – to be an author.  Well, I am an author, but to be a published author.

Writing is very much my happy place, I love nothing better than losing myself in this little world I have created, developing plots, making things happen. But when it comes to putting it out there, I hesitate. It is scary, and I don’t deal well with rejection. It knocks me down, and Sjogrens does that enough, I don’t need extra help.

I have to really build myself up to try again. I know, logically, that every writer goes through the rejection thing, I can quote how long certain authors took to get their first publishing deal, but it still seems like a personal rejection when they say no.

I have only managed to try twice. The first one was quite polite, the second very curt. But now the time has come to try again. To push forward.

I cannot let fear stop me from going for my dream. In the same way, I cannot let Sjogrens bring my life to a stand still. Yes, there will be times when I have to rest, when I am in a flare and can’t do things. But I must go for it every day I can. I must push forward and make the most of the opportunites that life gives me. My new year resolution this year was to make the most of every day, however limited my most may be.

So, wish me luck with the books, and wish me luck with making the most of every day of my life.

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Sjogrens Awareness Month -Day 25

Sjogrens Awareness Month -Day 25.

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Sjogrens Awareness Month -Day 25

Day 25 – support

I am very fortunate in that I have excellent support. Mainly it comes from my wonderful hubby, Paul. He does most of the housework, and is willing to push me in the chair when necessary. He understands the limitations that Sjogrens places on our life. I say ‘our’ because it is not just the person with it who suffers, but their loved ones as well.

Paul is willing to help in any way he can, sometimes to the point where I have to say, ‘let me do the things I can’.

I have recently received another source of help. I was referred to OT, and through that have a monitor in the house. It is linked to my medication dispenser, my personal alarm ( in case I fall) and to the smoke alarm.  So far it has only been used to do with the medication side. When I forget to take the dispenser with me around the house, and so don’t hear the bleep, the alarm goes and one of the lovely people calls through to me to check I have taken my meds.

My problem is that when I go out, if I forget to take the med dispenser I have to make sure I am back before it is due to go off. A few times I have had to rely on my sons to take the meds out for me. Then, yesterday, the dispenser suddenly started to bleep for no reason. The bleep set the monitor off and the person on the switchboard decided to send the warden out to deal with it.

So I got to meet Terry, who was very friendly and helpful, and it was sorted quite easily. Apparently it doesn’t like it if you don’t keep it flat, and having been in my bag to go out, it was upset. Then today I went out for lunch with a friend. In a bit of a fluster as I was running late, I went put and left it on the settee. I phoned home and my son promised to take them out if I wasn’t back by two.

I got home at about twenty past two, and there was no sign of my son. I was just about to take my meds when there was a knock at the door, and there was another warden! She was very understanding considering she had come out for no reason. I presumed my son had gone out, but he appeared a couple of hours later saying he had been asleep!

For a while I have been saying that I need to have notes around the house to help me, and I think the time has come to actually get it sorted. I need one on the door reminding me to take out my tablets, my phone etc, another in the car, (in case I ignore the one on the door, and to remind me to take it back into the house). I need one in every room with the word ‘pace’ on it ( see yesterdays blog). I am also tempted to make a few to save me having to repeat myself to my sons, but thats another matter.

Support is important. We can provide it for ourselves by making changes to make life easier, we can give it to each other, we can get it from loved ones and the agencies that are out there. Give it, use it, find it, but try hard never to be without it. Xx

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