New Year new hope

I had a lovely Christmas and New Year.

It was my sons 21st Birthday a few days before Christmas, 21st!

Wow it made me feel old and genuinely wonder how quickly the years have gone by. 

But I am extremely proud of the man my son has become, and unbiasedly know that he is a man who will do well in life, because he works his tail off now in order to achieve his dreams. 

He is, and always will be the best thing that has happened in my life. 

I was able to go to my parents and have Christmas lunch and on Boxing Day spend time with my brothers, neices and nephews and my brothers lovely wife 🙂 

Amidst the talking, joking around ( because all of us are jokers and cheeky remarkers) and eating I had a moment of feeling like the old me. I stopped and felt so much like me that it was scary but so exhilarating! 

I haven’t felt like that in a very long time, haven’t felt ‘normal’. But with my family, I felt so happy to be there, to see them all and able to join in that I forgot that I am actually sick. 

To be able to talk to my older neices and nephew and see how grown up the eldest neice is becoming, and how clever and cheeky my older nephew is and the spit of my brother! 

I felt like the old me, carefree, happy, jokey, and being silly with my young nephew as I played with his Star Wars figures and discussing how if a ghost tried to drink water it would go through its body, and that zombies eat brains, but not mine because it’s too small.. :,) 

It was good to feel that way, good to actually feel I am still me, that I am still me inside myself and to let that out.. Felt incredibly freeing 🙂 

I felt greatful for the amazing family I have, felt greatful that I could manage to see them, and feel grateful for the genuine love and support we all give to one another no matter what. 

Yes, I am still very ill. Yes, my mobility is so bad now that I lose the use of my legs in a weekly basis. Yes, I am still mostly bed and housebound.

But.

But, it’s the special moments like that which make me feel fortunate for what I do have, regardless of what I don’t. 

That despite how sick I am, I know that I have far more good things in my life than I don’t have. 

That many would love to swap places with me, and experience the love, support, and care of a family. To have a roof over their heads, a child and security. 

To know that despite how bad things can be, I am never truly alone and never will be. 

That, is worth far far more than what I don’t have health wise, and always will be no matter what the future brings. 

🙂 

To see or not to see

So.. I am having a pretty bad flare at the moment.  

Bad chronic all over pain, heightened symptoms, pretty much bedbound and my neurological problems are at an all time high. 

I bought an eye patch last week as advised by the eye hospital to give my worsening of vision in my left eye a rest. I found it quite amusing when I first put it on, being from the town of the infamous Blackbeard! 

Ten minutes later my amusement had quickly evaporated and for the first time, I felt fear. An emotion I very rarely experience. 

Putting the patch on my left eye I quickly realised I couldn’t see properly out of my right eye.. Much like when you have a gunk film over your eye that blurs your vision, my right eye around the edge was blurry and I couldn’t focus at all. 

I tried for ten minutes, closing my eye, checking I had nothing in it to cause the blurriness, taking the patch off covering my left eye with my hand and finally putting the patch on my right eye. Which was a huge mistake as I’m 50/75% blind most days in my left eye and I snapped the patch off my face and chucked it on the floor, as if in some way to get it away from me. 

Now, unbeknown to me for I don’t know how long my right eye is now losing vision. Around 25%. 

I wil admit I felt fear rush in as I laid back down and tried to make sense of it while my eyes throbbed from testing them. And questions, lots of questions. 

How long had my right eye been like it? How could I have not known? What does it mean? Is it the huge neurological problems I’m experiencing at the moment, or something else. And finally, am I slowly but surely going totally blind? 

I’m guessing the vision in my right eye has been balancing the vision in my left eye to such an extent I never noticed the sight deteriorating in it. 

Luckily most of my fear was replaced by questions and what I should now do to address the matter. 

I decided to not mention it until I could moniter it over the course of the next week. So that’s what I did, I wore my glasses more, I did make shift eye letter reading tests by placing my a book, my laptop, hairspray/deoderant bottles at a certain distance and slowly bringing the items forward to see how close they had to be for me to see writing or the object.

I suffered terrible eye pain doing it, and realise my pain is now in both eyes if I look at something for long periods of time and I develop a severe headache. 

I now have a headache 24/7 along with total confusion at times to where I am, who I’m talking to, what I’m doing or what to say or write as it becomes a gibberish mess in my head. 

I am starting to realise that there is something serious going on in my brain, whether it’s the pressure of my swollen brain and spinal cord or something else I do not know. 

I spoke to my mum about it last week and said I was going to wait and see (no pun included) how the week went before I phoned my dr. 

As a chronic illness sufferer I like so many tend to treat serious symptoms as a tiny problem when most ‘well’ people would be taking themselves to hospital and not waking to see how or if it developed. 

I’m so used to having weird new symptoms come and sometimes go, or come and stay that it’s become the norm for me. 

Well, my father dropped my meds off on Wednesday and was concerned as I’m in a flare. Now I, in stupidity remarked that at least my right eye sight hasn’t  gone.. With which he answered, “what do you mean your right? Is it both now??!” 

I could’ve kicked myself, I didn’t want to worry or stress him out but it was out there now so I explained what was going on and he made me promise I would call the doctor the next day and tell her. That I shouldn’t of waited and this was serious, what if I woke up blind? 

I hate worrying him but I could understand what he meant so I did phone the doctors the next day. I don’t think I would o if I hadn’t of promised, I can’t break a promise to my daddy though! 🙂 

My doctor got back to me and is furious I’ve still heard nothing from neurology, and said shed phone them as soon as we had finished our call. She wants me to go to the a&e eye hospital for immediate eye tests as she said, it could be something else seriously causing this and she’s really concerned I could have something else going on which might make me lose my sight completely. 

She also highered some of my meds to help with the pain I’m having. 

The only problem is, because I’m in a pretty bad flare at the moment I’m unable to get to the hospital for the tests and she advised me to wait a few days before I attempted it or it could trigger another massive crash. 

So I’ll wait til after the bank holiday Monday and have my eye tests then. 

There’s a bit of me that is concerned I may wake up blind one morning, or with 75% loss in both making me practically blind. 

But the bigger part of me is trying to stay positive, take care of myself as well as I can and try not to allow the issue to take over my everyday life. Ok so my right eye is now partially blind but I can still balance my sight out enough to be able to see. I wear my glasses as much as I can and try not to strain my eyes. 

As always, there’s going to be no quick solution or remedy. It’s one of the thousand waiting games I’ve had to patiently wait and work through since becoming unwell. As all people with chronic or bad health conditions do. 

As my mother says, it’ll all come out in the wash eventually.. Which is a motto I will keep in mind as I go through awhile new area of symptoms and tests. 

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. 🙂

Positivities :)

This blog post is going to be about the positives I’ve been able to achieve recently.

Regular readers will know how my life and conditions are at the moment, the growing pain, worsening symptoms maybe misdiagnosis.

But no matter what is going on, how unwell I feel at times I have and do achieve positive things. They may not seem massive to some, but to me they’re small, hopeful and helpful events in my life that make me happy and feel a lil better about my situation.

I have been able to cook a couple of times this week.

Plain meals and mostly frozen foods but as I started the week unable to move the left side of my body at all this was a huge achievement for me.

I bought my fathers birthday present early, shhhh don’t tell him but I’ve bought him a Tablet.

Not a medical one 😉

He is desperate to understand and use the internet, but finds a PC or laptop too technical. He plans to buy one in the sells after Christmas, but I know he won’t and spend the money on others as he always does.

He does so much for me, my mum, our whole family and he deserves gold medals. I am incredibly lucky to have such a person to look up to, respect, and be his daughter. So for once he is going to be treated, and I will show him the basics, download apps and get him into the 21st century.

I’ve helped my son wrap some christmas presents this week too.

He has bought everyone’s presents and wants them to be wrapped and ready really early as he is working constantly and won’t have time to do it closer to christmas.
He is doing so well in his job, he is up for promotion again soon, does the accounting, deliveries, sorts orders in top of working in the shop, tills, deliveries.

I am forever proud of him, and happy to help wrap presents and get this sorted for him. He’s so great to me, helps and cares so much it’s a minor help I’m giving. But a big achievement to be able to twist my hands into wrapping style 🙂

I have done washing and made half my bed up with clean bedding! Ok it took nearly two hours but by gum I was determined to do it. Resting in between on the duvet, cushions as I went was very comfy too 🙂

In England there is severe poverty at the moment. It’s painful to see so many made redundant, homeless, not being able to feed their children because they have lost everything and can’t manage on the benefits they’re now on. Food banks have and are cropping up everywhere, and it maddens me that in this day and age this is happening. I won’t go on too much as I won’t hush about my views on our ‘government’.. Ha

So I donated to one of the many many food banks.

I have a lil saved from my back money for disability money and I wanted to give back to people who need it, as I have done over the years and especially struggled the last two years money wise not being able to work.

I will now be donating several times a year, with Christmas coming up even £10 of food makes a huge difference to people and families.

This week I was able to wash my hair and wash at the sink too!

Yes, I am becoming quite adapt at using my right side to benefit the non working left side of my body. I was so pleased and felt so much cleaner. I even managed to shave the bottom part of my right leg.. I look a lil odd with one hairy and one part smooth leg, but who cares! It’s a big achievement 🙂

I also joined Instagram which has opened up another world of communication with other spoonies which is great.

No matter what it is, whether washing a cup up or getting dressed these are huge achievements for us chronic illness sufferers. The effort to do anything is ten times the amount it took before illness struck.
Some days myself and others may only be able to get from bed to the bathroom and that’s ok too.
Every and any task is an achievement, no matter how small it may seem it’s an achievement we should be proud of.

I decided this to be a positive post, and I hope you don’t see it as boasting but see it as little achievements that make me feel I am not just a figure in bed, hidden from the world and life around me, but a person who is trying my darndest to do what I can and fitting my life around my disabilities.

These positive things made my week easier, my symptoms a bit easier to bare and even a lil proud of myself by being able to cook and wash my hair.
It’s the little things that count in life and I understand that now more than I ever did before.

Constant infections

Hello 🙂

I’ve had a break due to my eye, concentration and migraine problems. It’s taking me so long to read/write and makes my eye and head pound. But I’m persevering with today’s blog which has taken several days to complete, and it will be done eventually 🙂

On top of the neuro problems I have another sinus infection and an ear infection that decided to join the fun! I’m on strong antibiotics which are making me feel constantly sick and sweating but I think they’re finally starting to help, touchwood!

I’ve found a lot of people with chronic conditions experience constant infections that take weeks to go, mine is sinuses. No matter what, every two months or so it appears, poking at my face reminding me that it was hiding instead of totally going. Then it’s the blocked nose, pounding face and swollen eyes, round of antibiotics, two weeks sweating, retching, phlegm clearing and then a couple if weeks respite until it starts again.
Apparently I left it too long to phone the drs, which has made an infection in my ear crop up. It just started leaking one night, my ear that is, and then followed by a crazy itch inside that would be impossible to get to! It drove me crazy! The ear pain joined and I finally picked up the phone and requested antibiotics from my dr.
She said I should of phoned sooner but I was trying to steam, use Vick etc to get rid of the sinus problem naturally as I take enough tabs as it is.
As they’re strong it’s only one tab a day which is great so I’m not fazed by it.

Apart from these problems I would say I am pretty happy at the moment.
My pip was sorted so I was able to pay all my debts off and be a lil bit better off each month.
It’s not just the money, I feel more settled in my self. It may sound terrible but the cooler weather recently has made me feel better, the sunshine and cabin fever it created was very difficult but now it’s easing off because it’s not nice outside!
I dread the winter and it does to my body but that’s then and this is now, as bad as it sounds that I’m happy it’s no longer sunny it’s true.

I’m looking forward to the dark nights, the nights are drawing in here and it’s dark by 8.30pm now. The clocks going back soon means it’ll be dark by 5pm and I’ve always been a fan of the winter. Yes it now makes my body feel like hell but it’s better to be unwell in the winter and not be tormented by the sunshine, fun to be had. Again sad, but true.

I’m not due for a hospital appointment until the end of September which I am also happy about. This rest from appointments, tests, needles, bloods, messing my body about has been lovely and my body appreciates it 🙂

My father is painting my front room in the next few weeks which will give it the face lift it needs. I would normally do it myself but alas these days I know I can’t so I did a rare thing and asked for help 🙂 it’s something I am not used to doing, asking for help but it is getting easier. Realising and accepting I can no longer do all I used to without total collapse is now very much understood by me. I may not always like it, but I accept it. Plus it gives me lots of time to spend with my father which will be great 🙂

Tonight I will be resting with more resting in between.. Electric blankets and Tempreture really don’t go together but hey, I reckon I’ll be able to stop having my hair washed soon enough with the theory it starts washing itself after awhile.. Always a silver lining I guess 😀

Hearing and seeing the world enjoy the weather

Hmmm, well this post may be a lil different than usual but I need to get it off my chest and know that most people with chronic condition/s will understand.

Summer is upon us. Here in England it has been scorching for a couple of weeks. All I have heard and seen via social media, outside and from talking with people how hot it is and how they love/hate it. There’s a huge diversity between the love and hate, yet they have no choice but to go out in it.

This is the first summer I have been fully unwell and housebound, and I am finding it a bit difficult.
I want to be outside in the sun, not directly in it but to go to the harbour side, sit outside a pub, meet family, friends go out with them and enjoy the long days and get a lil tan. But obviously it’s no longer an option and I have to say I am sick of hearing how others are doing all I want to yet complaining about it.

Does that sound harsh? Yes, maybe but it’s true. It’s not so bad in the winter, no one is out, there are no fetes in the park across the road, none of your friends meeting to sit watching the boats, world go by, no music festivals in the park, no outside unless you’re hurrying to a destination to get inside into the warm. But this total isolation indoors has been very difficult for me, and I didn’t expect it to be.

I’ve never liked the heat and was always complaining about the scorching weather, having to be here, there, everywhere in it all the time.
Now I wish I had the option. I wish I could complain about it, be searing hot, but be outside none the less. For the first time in many months the urge to walk, be outside has been overwhelming and I have felt myself become down about the whole thing, despite my usual resilience to unhappy thoughts and feelings.
It’s really difficult to see people via pictures, statuses not only enjoying themselves but their lives. To be at the beach, the park . Even just walking, something that is becoming more impossible for me to do. I want to feel the sun on my skin, my body as I walk, i want to be able to go out by myself and not have someone push me.. To be alone and sit and watch the world go by as I used to. To sit under a tree and read a book as I used to. To go anywhere alone, to be free and feel the freedom of walking.

I have been very unwell for the last week, and at times I haven’t been aware of what time, day it was just getting up to take my meds, eat and gratefully fall back into a fitful but mostly pain free sleep. I have welcomed sleep this week, it isn’t as painful as being awake, moving, trying to think clearly which I haven’t been able to do much of.

I woke yesterday with the clearest head I have had in a couple of weeks and felt I was turning a corner. For a few hours I didn’t feel the exhaustion of my body, the pain was bearable and I felt optimistic. Then by 1pm it kicked in again, the mind numbing, body paining every cm of my body feeling as though I was slowly but surely crumbling from the inside out. I took all the pain, muscle meds I allow myself in the afternoon and gladly crawled into bed and shut my eyes, happy to shut everything out and fall into blissful, undemanding sleep until the evening.

I am very pleased that my head is clearer, even if my body is still being annoying.
It’s very difficult to talk about how crappy I am feeling about the inability to go out. I don’t want to make my nearest and dearest feeling bad or defensive that they have the option. It’s not that at all. I’m glad they can go out, I wouldn’t want anyone to feel as though they couldn’t in case it upset me. It doesn’t upset me at all. It’s my own inability that is making me feel crappy about it, that I feel very isolated and as though I haven’t adjusted to the summer as well as I thought I would.

I am very surprised at how I feel, I thought I was past all that. The being mostly housebound was something I had accepted. And it is, but the recent weeks of sun and only being able to watch others being out in it, or told about it has been very difficult for me. And knowing that this is probably how it’s going to be for the rest of my life, the non summer activities, is something I am going to need to accept. And I have no doubt I will, but everything takes time and by next summer I will have hopefully adjusted.

MRI

My MRI went quickly and smoothly. My Father and partner came and my partner got me a coffee and a lil cake before I went into the waiting room, yum 🙂

I was a tad embarrassed that the radiographer had to help me out off my wheelchair and onto the scanner table, then lift my legs to put a pillow underneath. But I guess I need to get used to that sort of thing.
The machine was really loud, despite my noise reducing earphones but apart from that and the neck spasm that jolted my head slightly during the scan all was fine.

Just a few weeks wait for the results now. I have requested to see my brain scans, and the neurologist will do so on my follow up appointment. I have a fascination of seeing it, it’s my brain and I have the right too so I am. No stamping of feet needed either.. 😉

Home resting back in bed now. I want to make a loaf of bread today if my right hand will let me. It’s something I do every so often, I find baking very therapeutic which a lot of people are surprised by. The fact I bake, not the therapeutic bit 🙂
I also feel a sense of satisfaction making food from scratch and it being eaten. I can’t bake as I used to, but I do when I can. Sitting on my perching stool and pounding dough is great free anger management 😉 Freshly baked bread mmmm it’ll make the flat smell great too 😀

I have sorted all my hospital appointment letters, doctors and specialist diagnosis letters, ESA award, physio, home move documents etc ready for my Atos home assessment tomorrow morning between 9-11am. I really hope it goes ok, as I’ve said I’ve nothing to hide and I’m not concerned about that. Just that they believe me and my letters and be able to give me extra help.

When I move I will need a carer as my son isn’t moving with me and I wouldn’t have him caring for me in that situation. Them granting me pip will enable me to have a carer, so tomorrow’s appointment is really important for me.

Fingers crossed and gypsy luck it will all go well and I’ll my assesser will understand and believe in my conditions. I hate the fact I have to prove myself, but I can understand why I have to with all the scammers they have to deal with. Those people have put people like me in the situation of having to prove ourselves, I resent that. But it’s no good getting annoyed, it’s how things are so I just need to be myself and be honest. Two things I’m good at.. 🙂

Having to prove I am unwell

Yesterday’s football was interesting and cheered my partner no end as somehow Arsenal won.
As much as I think it’s great for how it helps kids get into sport I think it ridiculous how much footballers earn. They can earn up to £300,000 a week.. A WEEK! Seriously, how is that feasible? Yes they train hard, travel etc but surely kicking a ball from one end of a pitch to another and kicking a ball into a net isn’t worth that wage. Doctors, specialists, nurses, people who save lives should earn it surely.. Yet their wages are not even a fraction of a footballers wage. Someone said yo me once, ” I bet you wouldn’t complain if your son was earning that money” to which I replied, I still would! I really would too, I would be proud of him, happy he was doing something that he enjoyed but wouldn’t think he should be paid that much. I don’t care what job he does, as long as he was happy in it and earns enough to see him through. I am proud of him no matter what he does, regardless of what that is. Earning £300,000 a week wouldn’t make me more proud, money isn’t the most important thing in life. I would take happiness over money any day.

My medical assessment is tomorrow morning so today I will be sorting my proof letters and putting them in a folder ready for the assessor to look at. I am going to be wheeled to the desk and hand the folder over, then she can ask questions based on the letters and information that is in it. I thought this would be easier than them asking all about my individual symptoms and me getting into a tizzy or constant word confusion. I have to take my meds too and any aides I use at home. Well, this will be difficult as I can’t exactly bring my bath lift, toilet frame, perching stool, commode and bed rail. I could carry them in a kinda leaning tower of Pisa around my wheelchair but I don’t think that would be practical or safe. So they’ll have to put up with the list I will have in the folder. I still hate the idea of having to prove I’m unwell. If I get someone who doesn’t believe in ME, which is very likely, then I have no doubt my aapplication will be denied. I really don’t want to go through an appeal as it can take upto a year to sort it out. Errgh I am really really not looking forward to it! My Father is coming with me and I’m glad he is. He is great in situations like this and keeps me calm and focused. Something I will need to be before I go to there. Fingers crossed it’ll go o.k and they will believe I am ill and not lying about it. Here’s hoping!

My health continues to deteriorate, the head lapses are becoming longer, more closer together and disorentating. I constantly feel as though I am not in reality, everything is feels dreamlike and out of synch. I have determined I will call the drs on Tuesday to see if I can chat to my doctor. I’m not going to wait any longer as it’s very unpleasant to be like this and go through continuous and more impacting head lapses everyday.

Once the forms are sorted, washing machine put on and clothes laid out for the morning I am staying in bed and resting my screaming muscles on my electric blanket. I couldn’t manage with out one, it helps to ease my symptoms and warm my limbs into movement. The next invention I am looking out for is an all body electric blanket suit. That would be awesome! Mind you, if any inventors made on due to reading my blog then I want a cut in profits and a free suit please! 😉