Shoo Flu

Yes, I have flu back again if it ever went away, and another sinus and ear infection.

But but but, I want to share some great news before I start complaining.. 😉

My smear was clear! yay!

I am so very relieved, now I know it is my Endometriosis kicking in I can start dealing with it. I can handle anything if it means I am not facing treatment for cervical cells. That would have been really really bad on top of my current conditions.
Yes, it is still not great that I am having such severe symptoms all rolling in with my other ones, it is making me sicker. But, no cancer cells means a very happy Stacey regardless of having to deal with more symptoms 😀

I just cannot seem to shift this flu, I felt I was getting over it on Friday/Saturday but Sunday it was tricking back and Monday morning I woke with my ear stuck to the pillow due to leaking mucus and full of phlegm, temperature, my eyelids and face swollen due to the sinus infection. The pain has become constant and severe, plus the seizing in my neck, shoulder and arm was back.

I phoned the doctor to ask for antibiotics and he gave me more Diazepam too. I cannot talk to my doctor for two weeks so I will have to wait to ask about trying new meds, but the locum I spoke to was nice. He actually asked what I would like, what helps me.. I so wanted to say, I will have two of every med you have please.. hehe but I held back and asked for Amoxicillion instead knowing this antibiotic works eventually.

Why do they make tablets so huge though? It is as though they are trying to prove they are powerful drugs by the shear size of them.
Swallowing is a big problem at the moment as the left side of my neck is frozen, it feels as though I am swallowing a brick! Most of my meds are big tablets, at this rate I will be able to build an internal house at the end of my antibiotics..

My Fathers Birthday went really well. He loved his tablet and is now becoming a pro at surfing the internet! I am so pleased he is getting on so well with it, it definetly keeps him occupied 🙂

I am so behind on everything due to this flu. I need to sort buying the last of my Christmas presents, start getting Christmas food in, sort a delivery to the food bank, pay bills, sort a savings account, my funeral plan,housework, sort new shower, flooring, kitchen wall cabinets and lots and lots more.
I have time for the Christmas food and gifts, but all these little things are piling up and my body is on full strike at the moment. I get so frustrated by it, I would have gotten it all done in two days max before and now I cannot function long enough to dial a number let alone anything else.

I really need to sort something about a cleaner or carer to come in, maybe after Christmas.
I am finding it increasingly difficult to stay on top of housework, cleaning, washing up etc..
My son is more than happy to help, but he now works up to 40 hour weeks starting at 6.30am and there is no way he can look after the house, me, as well as his working so many hours.

I do not want my illnesses to take any more of his time and life than they already have and do.
There is no way I will put anymore onto him than I already do, and I can now get carers allowence so I think I should start seriously looking into it. I have a friend who is carer to his Mother so I have an idea of how it works, it is just being well enough to arrange it all.

I am stressing about everything too much, which is unusual for me. Not being able to do much but be stuck in bed gives me too much time to think. Plus being up most nights too. My brain is trying to kill me with thoughts, ideas and stress!
It won’t win though.
As soon as my eyes go down, my ear stops pounding and my flu dries up I will be back on the ball rolling from one item to another. Maybe a little wobbly on that ball but in the end, I will get off put it away and be able to relax. 🙂

Just keep swimming

Which has been my motto this week as my body has been a bit up and down symptom wise.

I am having terrible pain in my lower back which means I cant sit up without my electric blanket over cushions so the heat can help soothe the pain. I has been slowly creeping in the last few weeks and has started to be daily accompanied by the hugging sensation in my chest.
My left side is still seizing and unseizing, from a few minutes to hours to days. I find it difficult to swallow when my neck is frozen, it feels as though there is something large and flat stuck in the left side of my throat, which there obviously isn’t.
The pain has upped again too, causing my limbs to shake and spasm and the lightening like striking has decided to travel from my head, down my shoulder blades and into my spine.

I really have no idea what my body is doing or why it is doing it. I do know that I am becoming increasingly annoyed by it and also slightly worried I am going to lose the use of the top half of my body as the seizing and freezing of my limbs are happening every day, and now travelling into my right arm and side.

I don’t usually worry about my aches and pains, but I won’t lie to you or myself that I am concerned I will wake up one day and not be able to move my body at all.

It used to take me half hour to be able to start getting out of bed in the mornings, which is slowly beginning to become longer and longer time wise, up to an hour for me to be able to move properly to get out of bed.
It’s a head scratcher for sure, one which I hope will go away before I have to phone the doctor for more diazapam.

On the plus side..

My partner put together my triple wardrobe and all my clothes are organised which is a brilliant help for me. Bless him, he spent the weekend doing it, even though he went into work early Saturday morning and he has a very demanding job. It was very difficult to put together, flat packs are the worse type of furniture!
But my bedroom now looks better than it ever has, and I have wooden blinds put on at the beginning of November which will be another item that will make my symptoms easier. My windows are over 8ft long, so you can imagine how much light it creates.But the blinds will keep the room dark and the nasty sun away. My light sensitivity has become worse, so the blinds will help so much.

My bedroom is my heaven and hell, but with these new improvements it will be more heaven 🙂

Legs, Grapes and silliness

Resting day today, I hope! 🙂

My legs have been terrible this last week or two. They seem to have given up knowing how to walk properly, which I am not amused at. Giving up? Me? Never! My body shouldn’t be allowed too if I don’t.. They’re traitors! They would be banished to some far away land if I didn’t need them, which they know. Tsk.. 😉

My healthy eating has paid off in a weight way, I’ve lost nearly a stone in a month. I am beyond happy about this, when I lay down I no longer have a mound stopping me seeing my feet! It’s brilliant, I have hip bones, ribs, and real shoulder blades, something I haven’t seen for a year.
All due to keeping to a fruit diet. I have tried many times in the past to eat healthier but I fell within two weeks, always gradually going back to fatty foods, crisp and chocolate. If I really want to have choc I will, but I haven’t had any in many weeks and the last time I only ate half before I started feeling really sick and gave it away. I no longer crave it, nor crisp, pork pies, sausage rolls.. Gawd I ate them everyday. Now it’s natural for me to reach for an apple, banana, grapes.. Yes I’m still eating lots of them! I’m like a Greek figure, hanging grapes over my mouth in bunches and at times having them pop off the stems rolling everywhere and hitting my face. It’s rather amusing, but until I get someone to hang them for me I have to do it myself. You really can’t get the staff theses days..
😉

I am already getting itchy about my results, I really, really, reeeaaaly want to know what they are! I am not good at waiting for things like this, at most things that keep me guessing, it eats at me until I get the answers. I’m the kind of person to wonder about something, if I hear about it or see it, say a town and I will go straight into the internet and find out all I can about it. Thank goddess for the internet, years ago I used to have to scroll through books, thesaurus, maps and very rarely would I be satisfied with the the little information I found. Apparently it’s called having an inquisitive mind, or as I say, a nosey one. Whatever it is I will be on tender hooks until all my results come back. I don’t guess the results, my thoughts are that whatever they are, well they are but at least if I know I can finally deal with it/them.
It’s the not knowing that’s the worse, especially when I know it could cause big changes in not only my daily life but my lifestyle. Grrrrrr I hope they arrive soon!!

Big breath, calming thoughts and relaaaaax.. Until the thought pops into my head again.
🙂

Priorities

I may sound a bit harsh, but I am getting more and more annoyed by people who over dramatise the smallest of things.

I’ve never had much tolerance for it, I’ve always seen it as attention seeking. But now it’s become a huge annoyance when people exclaim, oh I’ve got a headache I hate my life…
A headache? Really?? Your life is so awful because of a headache.. You poor thing!! Don’t mind that there are people in the world dying of starvation, war, diseases, you have a headache! You poor thing! Wow, life must be so awful for you! ……
No.
You have a headache, take some paracetamol and hush, stop attention seeking and get your priorities in order! I know it’s gotten worse since I’ve become more unwell, and I do find myself wishing the only thing I had to worry about was a headache, being late for an appointment, can’t afford the new shoes I’ll simply die without..

I try not to get annoyed as this only causes me to use energy I really can’t afford to waste. I try to put in place the techniques and understanding I learnt when doing psychology, that each person is different and it may not be a cry for attention but one of help.
But when you’ve spent a night up in agony, being sick due to pain and seizures, can’t walk, feel certain limbs and unable to urinate properly my understanding and patience goes out of the window.

I do feel bad about this at times, that I am being too harsh. That I am becoming less intolerant and quicker to anger. That I need to step back and understand everyone is different and some people don’t cope as well as others. But I tend to get only half way through these thoughts and then become frustratingly angry. I delete the person/newsfeed of that person if it’s happened on numerous occasions, and that helps.

Am I the only one who feels this way? Am I being too harsh? Or is this a reaction that many people with chronic conditions feel?

I sound really angry today! But I’m actually not, far from it. I’m happy, content and at ease. It’s just a bug bear of mine, one that is occurring most days and I needed to get it out 🙂
I am a lil poorly today, but I expected that after yesterday. But again it’s not as bad as it once was, I’m not laid in a dark room unable to move or think.
I am going to make some necklaces today and a bracelet for a niece of mine. She’s put in an order for a butterfly one 🙂 here’s some pictures of what I’ve been making, they are also going to be used for bracelets, several different types of different coloured skull heads, butterflies peace signs and different coloured cord.

f

This will keep me busy and out of trouble for a few hours ;D

Water issues

I am going to be very honest in this post about the trouble I have urinating. I put a warning here for anyone who isn’t comfortable reading about this to not go any further.

I mentioned awhile ago I was having trouble emptying my bladder, now this issue has become a lot worse. I have no idea if this is ‘normal’ for other fibro, M.E patients but I really would be interested to find out if anyone else is going through the same thing.

I cannot urinate properly at all, and it’s now taking four/five trips to the toilet to empty my bladder. I can sit there for ten to thirty minutes feeling my bladder is going to burst but I cannot go. When I do go it’s a tiny amount, and the constant trips to the bathroom continue to be like this until my bladder is empty. It’s causing pain in my stomach, bladder and side as I constantly feel I need to urinate but it just won’t happen properly. Not to mention the energy I am using up getting to the bathroom and back. I have mentioned this to the doctor and my specialist, and they give me constant urine tests that come through clear. So it’s definitely not an infection doing it. I am starting to wonder if it’s connected to my conditions or it’s something else. I was thinking it could be my endometriosis but it’s been months now and way before it started playing up again.
I am at a total loss at what to do to help ease this situation. I will again mention it to my doctor on Friday when I have my phone appointment with her and see if she has any ideas. I really hope she does!

I was up most of last night with my nemesis painsomnia. It’s been a few weeks since the pain has been that bad, I was shaking and retching purely due to the severity of the pain. I will admit to bring disappointed this happened, I has hoped they were a thing of the past. I had been paining all day which isn’t unusual, but the pain hit like a punch in the stomach, quickly and with no warning. The pain is easier today though and I’m doing nothing to aggregate it!

Apart from that and my usual daily symptoms I am still feeling better. My neuro meds have made a huge difference and I wish I had been put on them months ago instead of having my old ones higher end to maximum dose. But hey, it was trial and error and I’m just glad I am on them now.

I phoned Atos yesterday and was told I could have an appointment next week, at there offices. I explained it was put down for a home visit and he questioned why and tried tripping me up about my doctors appointments, ‘how did I see them then if I’m mostly housebound?’ When I said my doctor comes to see me he soon changed his tune but his yeah yeahing annoyed me.. So I started saying it back and he stopped doing it.. Mean? Nope just standing up for myself, well laying in bed but the quote still stands 🙂 so he took my number and said I would hear from them in the next few weeks, which I really hope is true but if not I will be phoning in two weeks time to check. They are fed up with me calling every week asking about my claim, but I’m fed up of them taking five months to give me an appointment. It’s ridiculous and I know so many people who are waiting for much longer than I have. I wish I could go out to work, I don’t want to be like this I would be totally well again if I could but that’s not going to happen any time soon. I don’t like being made to feel I’m ‘scrounging’ as I’m not, I just want them to get off their backsides and do something. Here’s hoping!

Gaining from others hardships

I was talking with someone who has severe ME and how she had been told by a person that all you need to cure it is to think positive. In fact she had recovered from possible ME, Lupus or Lyme disease and had written a book on it.

Can you see what in that sentence is total drivel? Well. yes all of it but I picked up straight away on the word ‘possible’. How the heck can you write a book on something you don’t actually know you had?? That’s like me saying I wrote a book about life with no teeth.. How on Earth could I know what life was like without them and then write about it! It really bugged me that this person is writing about things they are not sure they had, making profit by doing so and then, THEN , telling others how to cure themselves! Seriously?? When there are so many of us struggling daily with real diagnosed conditions and looking for things to help us, and for that all important cure. Which doesn’t exist. On top of that, being told that positive thinking will cure you.. Oh wow, why did I never think of that?? Gosh, silly, silly me! All I have to do is think positively and I will be out of my wheelchair and doing cartwheels in no time!! Grrrrr… How idiotic.

Yes positive thinking helps you cope, but cure you? There’s more chance of me waking up tomorrow and finding 1 million pound staked neatly at the end of my bed than that working! I hate hate hate people who A. Talk about things they have no idea about and B gain money from people who are desperate for anything to help cure them, and spending money they cannot afford on them. How do these people sleep at night, knowing that their money is earned through the misery and desperation of others? I couldn’t look myself in the face if I did that, I would prefer to be eating out of bins than do it.

To say I was and am still peeved about the whole thing is an understatement. People suffer with depression because of the conditions and the impact they have on their lives. Not get ill because they’re depressed. It is darn depressing at times living a quarter of your previous life and daily being unwell. Of course you get down, depressed, days that you think you can no longer go on. You wouldn’t be like that in the same way unless you were chronically unwell. You may have suffered from depression previous to your illness/es but that is not what has made you ill. Thinking yourself well…pfft.. How about hushing your opinions until you know anything about the personal and devastating subject you are writing about. I can literally imagine a pantomime villain twirling his moustache at this devious money making scheme..

Deep breath out… 🙂

Apart from my annoyance and ranting, my morning has been quiet and restful. I am still paining and aching after yesterdays outing, and being sensible by resting up unless there is a very very important reason to get up. Going to the bathroom has been the only thing I would class as being important so far. I am going to start practicing on different bracelet styles in a bit. I have cord bracelet string at the moment and the rest is being delivered soon. There is a lot of effort put into bracelet designs and as I haven’t made a bracelet in years I am going to refresh my memory. Either I will get the knack of it gain really quickly or tie my hands and fingers together in the process. I would prefer to get the knack back, but would find the tying hands very amusing. It’s a win win situation either way ;D

 

 

 

Not so patiently waiting

Feeling quite annoyed today, which I know doesn’t solve anything or make things quicker but my patience is running low.

I finally had my confirmation letter to go to the pain clinic and see a nuerologist and they haven’t changed the appointment date but kept it for 10th June,which is  five months in total I would have been waiting for it. On top of that I have an 18 week wait to see a physio and no word as yet from the rhumetologist although that is supposed to be being fast tracked. As were the other appointments so I won’t hold my breath as I will most certainly be dead in the waiting time if I did! I’m not sure if this waiting is usual in other areas but it seems if you live in the south west of England then it is standard procedure. I am not blaming the people who work for the NHS at all, the nurses and doctors, and I know I am extremely lucky to get free treatment but I worry what kind of state I will be in before I get to go to these appointments, or if I can go at all by that time. As I’ve been told by my Doc last week I and my health are deteriorating and that has sped up this week to the point I can’t stretch my limbs at all as they lock and the pain and spasms this causes is I have to admit, awful. But how do you not stretch limbs if they are in pain, it’s a natural thing to do to relieve the pressure, but my body seems to have decided to flip around and make it 100 times worse if I do. Think of a cramp in your leg, then lock the muscle causing it to be totally stiff, add in massive heat and pain and then spasms in the rest of your leg and through the locked muscle for ten minutes to an hour and that’s what it’s like.

I also wonder how many people are suffering because of long waiting times, how many peoples conditions are so much worse because they’ve not had the treatment they need. How many people could of been saved worsening health and emotional trauma the months of waiting has caused. Do they think, oh well if we make them wait 5 months then they will probably get better and we won’t need to treat them? As if we are all in a state of hypocondria and the waiting time will put us off from pretending to be unwell. Which seeing as our doctors actually refer us to them and fully know we need their help, is total crap.

I’ve learnt so much patience over the last year, patiently waiting for symptoms to ease, situations my symptoms have created to pass,  to not get annoyed at how my once clean tidy home is no longer so, patience in waiting til the absolute last minute to take my meds or call the doctor only when I feel extremely unwell. I could practically become a saint in patience I practice these days ( well maybe that’s a bit far fetched) but this is and has annoyed me to the point I am not only ranting about it here but twitter and people too! But, I have a plan which I started today. I am ‘phoning each of the places asking if they’ve had any cancellations. When answered with the eneivitable, no, then I will polietly inform them that I will ‘phone them again at the end of the week to check again. I will continue to do this twice a week. I don’t care how unwell I am, how slurred and patchy my speech is, how much energy I am going to use up doing this I am determined to see it through. Then maybe, just maybe they will have a cancellation or get so sick of me ‘phoning them they will create one for me.. Here’s hoping 🙂