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. 

Aftermath

Christmas was beautiful 🙂

Spending Christmas Eve and Christmas Day until 4pm at my parents was so lovely.
It’s very rare I spend that much time with them, it’s been a year since I stayed at theirs.

I had to go to bed quite a few times to rest as I can’t sit up for long anymore, but I finally got to use the special electric bed and boy was it comfy!!

It folds up how you want it and yes I did play around with it, amusing myself by using the controls to lift the bottom then the top in lots of different heights.. I’m such a child sometimes :,)

I was a bit sad that I had to lay in the bedroom by myself while everyone was downstairs watching films, chatting etc.. But at least is made it to my parents and enjoyed as much time as possible with them.

I was very spoiled gift wise, by all my family and my partner. He got me a huuuuge teddy bear! It’s 3ft and is a substitute for when my partner isn’t here… I named him Bob and he is currently laid next to me in bed keeping me company while I occasionally take pics of him eating, wearing hats.. Yes I think I really do have neurological problems.. hehe 😉

I am knackered now though, my body is exhausted and paining badly.
I knew I would be dealing with this, doing so much to-ing and throughing plus extra exertion was bound to put pressure on my body as it’s not used to it.

I was dreaming last night that it was high summer around ten years ago. I was in the park with my son, Mum and Sister which is something that was very common back then.

The park is huge, it has a small football pitch, tennis courts, (that I once played tennis in) assault course, two basketball pitches, two child play areas a school, (the primary school I and my son went to) and still acres of empty park to run around, picnic in. It was this park I myself played in as a kid.

Well, I was dreaming about a summer long ago. Having a picnic under our usual tree, playing football and basketball with my son and sister then booking a tennis session for the next day.

The dream was so wonderful, the sun was shining, we were all so happy, so carefree, I was making daisy chains and putting them on my head as I watched my son kicking the ball around and waiting until it was my turn in goal.

I swear I could feel the sun on me and hear the bees buzzing around, it was that vivid.

I felt the dream start to flicker away, I could feel pains in my back and legs start to intrude into the dream. I was half asleep and half awake, trying to hold onto the dream when I moved my leg in reality which jerked my hip and back into massive spasm and myself into full wakefulness..

And I burst into tears.

Not through the pain, or discomfort but from the dream that I was so happy in and the knowledge I will never enjoy simple days like that again.

I laid in ball trying to massage the spasm out of my back and push my leg into the bed in the hope the pressure would ease the pain and I cried like a child.

Reality against my dream was such a huge difference, which is unusual because these days I tend to dream I’m disabled, it’s now very rare that I dream I’m well and able bodied.
I’m not sure if this happens to other people, that in their dreams they are well or not.

This time it overwhelmed me.
I was crying for the past, the happiness, the ‘well’ me. The knowledge I’ll never be well enough to sit in the park, play tennis, football, sports, walk the breadth of it again. Never move without pain, spasm or limb locking.
Never be as I once was.
The simplicity that was in sharp contrast to the situation I woke to, in rigid pain and body spasm.

I calmed down after awhile but it took some time to lift the horrible feelings of despair. Feelings of loss and how my life and health is now.

It’s unusual I feel like this nowadays, I’ve come to accept as much as I’m able to how my life and body is now. This dream triggered such sadness in me though, and waking feeling like hell was just the icing on the cake.

This last year has been the most difficult of my life, and I don’t say that lightly. My life has never been rose filled or easy, but this year it’s been a roller coaster of ill health, acceptance, self preservation, sadness, despair, hope and hopelessness.

Yet I end the year grateful for all that I have, which overrides what I do not have. Grateful for the people I have in my life, that I can to an extent enjoy life in a simpler but a more appreciative way.

I have no idea what 2015 will bring, and I really don’t want to know. I am safe in the knowledge that I am still here after a very difficult 2014, and if I can achieve that then I’ll be able to get through 2015 🙂

Happy New Year to all my readers.
I wish you a happy, healthier and easier 2015!!
XxxX

A new week

Last week was a bit difficult pain wise, I think the gastric flu stirred up my body and is causing a lot more pain.

The colder weather isn’t helping either, I love the winter but nowadays the winter doesn’t love me! The cold makes my conditions worse, I’ve started waking in extreme pain again, when I am sleeping which is difficult again.

I can’t seem to switch off at the moment, I lay there so tired that my eyes are burning but I just cannot switch of my brain and drift to sleep. Painsomnia mixed with insomnia.. Is not fun! But hey, it could always be worse and I can’t wake up! 🙂

It was a quiet week, my mum visited which was nice, and brought food for myself and son.. Bless her she does still love to feed people 🙂

My son has been buying new furniture for our home which is lovely, I haven’t been able to buy any big purchases as money is so tight. But he is insisting he wants to, and along with new cabinets he is getting a new corner sofa for the front room! We’ve always wanted one, the room is a perfect shape and I’ll be able to lay on it as sitting up is difficult. but alas I’ve never been able to buy one as even before becoming ill most of my money went in bills and daily living. But now we will not only have a new corner sofa, but one that goes into a double bed which will come in handy!

I’m touched by him doing this, he’s worked hard and saved his money up for these items and I’m so lucky that I have such a considerate, thoughtful son. He said awhile back that he wants to provide towards the home, I’d paid for everything for 19 years, brought him up and it was now his turn to do so, and look after me. He’s a great lad :,)

I’m still healthy eating and find it does help with my energy levels, I am not as sluggish now. I have the odd biscuit now and then but I find I cannot manage as much food or type of food I used to eat. I naturally go for a tangerine or apple now instead of chocolate.. Wow, I never thought I’d see the day that happened! Miracles do exist.. 😉

Gastric flu

I am now over the worse of gastric flu.

It knocked me for six, I started feeling a bit of on Wednesday but thought it was the chip shop food I had eaten as I am now not used to such greasy and huge positions of food.

Friday night saw me being constantly sick, I had sweats, shakes, massive temperature and felt in a lot of pain. I spent Saturday and Sunday being sick, I couldn’t even hold water down. I was bringing my meds back up which caused my pain and conditions symptoms to rev up. I felt better by Sunday night, my sickness calmed down and I managed to drink a cup of tea without feeling my body rejecting it. Ohhh that cup of tea, ’twas like drinking paradise! 😉

While I still feel sick, shaky and weak I am much better, touchwood! My sister was also unwell, and seeing as we hadn’t been in contact I guessed it was a bug going around. I’ve been warned that any bug or illness going around impacts on you much more when you have chronic conditions and I certainly believe it now!
But there’s always a silver lining, not being able to eat for days has caused some more weight loss. I’m happy about that! The bug wasn’t worth the rapid loss but hey, at least I got something from it 🙂

My Mum is due to visit me today which will be nice. She’s been rather unwell herself recently, getting adjusted to her rheumatoid treatment and symptoms. We chat at least twice a day though, and do have a close relationship. It’s become even more so since she’s become unwell, we both have similar joint problems and can completely understand what the other is feeling and going through.
She’s had to give up work because of it which is difficult for her as she’s always been pretty independent. She’s keeping as active as possible though and there has been some improvement in here hands becoming less swollen which is great.
We will gossip and drink tea today, and I guarentee she will bring some kind of food to eat! Bang goes my weight loss.. 😉

I also have a phone appointment with my doctor today when I plan to talk about a few things. One is what I can do about the muscle swelling my blood tests showed are still off the charts. I want to discuss what I can do to try and help this. I have tried all the different natural foods to help it but to no avail. My thinking is the swelling must be causing me and my body a lot more pain and symptom escalation than normal. I can’t take ibobrufen or aspirin as I react badly to them but there must be something I can do. She’s usually pretty good so hopefully she can come up with a helpful solution 🙂

Teenage Mum

Regular readers will know that I have a son of 19 years old and I am 33.

Now this isn’t me being vain and claiming to be younger, I really am 33 and care nought for age or vanity. I was a teenage Mum, having my son at 14 years old.

I hear so much bad press concerning teenage mothers, and having first hand experience of being a very young mum and knowing others that are I find this grossly unfair and untrue.

Just because you’re young, it doesn’t mean you’re or are going to be a bad mum. How many millions of mums are older yet don’t raise or treat their children properly? In fact, being younger usually makes you want to prove others wrong and raise our children as well as any other older Mother.

Also there is this ridiculous notion that young people become pregnant to claim money and housing. You cannot claim anything other than Child Benefit until you are 16 nor get housing until you’re 17. Even then most don’t as they have had to work to bring any kind of income to their family and continue to do so, they don’t just suddenly throw their jobs in and move into a house just because they’re an age to claim. That notion is as untrue as the person who told you that lie. Every parent recieves Child Benefit, regardless of whether they work or not so ‘claiming of the state’ is something all parents legally do.

I personally worked at the age of 14. I was receiving £14 a week, a tiny amount when you consider that had to cover nappies, milk, food, clothes etc for your child. It barely covered nappies. But I was grateful for the money and didn’t expect others to pay because I was a mother, So I worked anywhere I could in between school, college and being a Mum. I scrubbed toilets and am not ashamed of it, it put food in my child’s mouth and clothes on his back. I went to a teenage mum school and took my child with me, so my parents didn’t bring him up either which is another instant thought to people.

From the moment I was pregnant I loved it, I loved the thought of its life, of nurturing the growing of my child inside if me. I never once thought of an abortion, to me it just wasn’t something that was an option. I believe in abortion, I believe every woman should have the choice of whether they terminate a pregnancy. My choice was to keep my pregnancy and I never once regretted my decision.

The moment he was born the world stopped for me, it was just me and my son. No one else existed for me, the moment they put him into my arms I felt a surge of love that over powered everything I had every had in my life. From then I knew my son would be my life, I would do anything for him and raise him as best I could despite anything that happened in life.

That feeling is still inside me, that love has never once faded, no matter how old my son is he will always be number one in my life. I will always be here for him no matter what, regardless of anything going on with me.

Being a teenage or young mum doesn’t mean that you won’t or can’t look after your child. That you will neglect them and go partying, rely on benefits or have partners coming and going out of their lives.
I personally didn’t have a relationship for many many many years because I didn’t want to bring anyone into his life that would cause it harm or scar him emotionally if it turned sour.

Being a teenage mum actually turned my life around, made me responsible, grow up over night and have the burning desire to make sure he had everything I could give him, life wise and emotionally. And this is true of most teenage or young mums. I don’t know one person who neglected or harmed their child through bad parenting. The opposite is true, they worked extra hard to rid the stigma being a young mum had labeled them with.
I was at school, working and in college to make ends meet and ensure I had enough qualifications to get a better job. Everyone of these things were worked around my son, which meant working from 6pm to 4am most times as it was the only time my parents could watch him. But so what, what is tiredness compared to stability? It’s no contest at all.

Yes at times money was tight, we didn’t have the best furniture, home furnishings. But what does that matter? What we lacked in objects we more than made up for in love, stability and an extremely close relationship as it was always just us.

I know many people who had verbal abuse shouted at them, names tagged to them (tart, etc to rude to spell) and even total blanking from family members and people they knew. I had some of this too, but being an outspoken person who gave as good and better as I got it didn’t last long! But still, it is awful this happens.

To this day if I had a choice, I would do it all again. I have watched my son grow from a tiny baby to a toddler, child, teenager and now an adult who I am extremely proud of. He is a well rounded, intelligent, caring, well adjusted adult that I still sometimes can’t believe is now an adult. Can’t believe that such a person came from me because he is so brilliant.

I am not saying I was or am the perfect mother, I have made mistakes but I have learned from them. No parent comes with the perfect ability of how to raise their child, you learn as you go.

So no parent should be judged by their age. No parent should be judged at all, but helped or at least have understanding before being labeled. We spend too much if our lives judging others because what they do or are doing isn’t deemed ‘normal’.

There is no such thing as normal, we are all different, all lead different lives, all have things happen that others may never have happen to them.
Judging and criticising shows your character not theirs. So who’s the one in the wrong then..

Home assessment

Yesterday was a day of good news that totally overrode my crash.
I had a call from Atos they had a cancellation and offered me a home visit assessment on Monday!
I’ve been waiting nearly six months for this, and said yes immediately. An assessor will be here between 9-11am. My father will be here to help get me downstairs, open the door and stay during the assssment. He is also going to photo copy all my proof letters, my me and fibro diagnosis, specialist letters, appointments, home move, doctors letter, ESA assessment letter etc and give to the assessser so they can put them towards my claim. I have no idea if they accept photo copies but I also have the originals to show.
I am relieved and apprehensive at the same time. But I also know I am not lying or hiding anything from them so I hope they see and understand that.

The second good news, not in order, is about my son. He got a promotion!
He had the interview on Monday and they phoned him yesterday afternoon. He didn’t get the promotion he went for but they gave him another as the person is leaving in a few weeks, so they offered him his job! He is now in charge of technology in the store and has to go away with managers every few months on talks, tech side of things..
I am so proud! His first job, he hasn’t been there a year yet, and has been out five weeks with his broken foot. But he’s been promoted! And quite rightly, in my bias opinion 😉 though he does do overtime if someone’s unwell at a moments notice, is working in the offices sorting orders and stock and never takes sick days or time off, apart from recently and he was made to due to his break.
I even got a lil emotional when he told me, mothers love and pride eh! 😉

I am still very unwell, but the good news has made me keep smiling. I am starting on codeine again, a bit early but the oramorph isn’t enough and the pain is too much. Hopefully it’ll help! 🙂

My mother and sister are coming to visit this afternoon which will be great. Seeing them is always fun, no matter how I am.
All I need to do is get downstairs, a challenge but with a lil help possible! 🙂

Visitors :-)

My mother and sister came to visit today which was really good. My mum brought round food and my sister a really lovely bunch of flowers, they are pride if place on my cabinet un my bedroom so I can enjoy looking at them. We all had a really good catch up, nattering away about everything. I haven’t seen my sister in a few months due to being unwell so it was especially good to catch up with her. As children we used to be a mix of fighting like cat and dog and getting on well. Thankfully we just get on well these days 🙂

Im a lil unwell again today, I have a feeling my devil’s grip hasn’t gone as I have tremendous pain under my right breast to my rub and all in my back, I think it’s muscle pain. I am continuing to use deep heat but it’s not making much difference now. I will call the drs if it’s still there tomorrow, though I really don’t want to as I want it to go on its own without having to phone the drs again.

I need to go to a housing collection point tomorrow afternoon to show picture ID or they won’t process my home move application. It’s a pain, literally as my legs and pain levels are pretty bad at the moment and I know going in the wheelchair and waiting for upto an hour will put strain on me. My friend is giving me a lift, and I am thankful for that. The place is in a rough part of town, very rough. I have family in the area though, and it’s just some of the locals that give it such a bad name. I’ll be safe enough getting a lift thee, the buses get stoned quite often. Buses are a total no go these days anyway which is lucky for this trip! I appreciate my friend taking me, he is one of the few who have stuck by me and he’s a great friend. It’ll be really nice to catch up on the trip there and back.
Today’s plans are to move from bed as least as possible. My body is paining and throbbing really badly, and my feet and legs have decided to join in the fun by swelling up. Oh the fun this brings is almost to much to handle!.. Sarcasm yes, but hey better to scold than scream 🙂
I have my treat drawer next to me, yes I now have a drawer for crisp, snacks etc and I dig in on days like this. My weight is actually staying level at the moment, which is great. No more weight gain for a few weeks now, and I think this means that the tablets have finally levelled out in my system. It’s not surprising that my weight gain happened, I am on a lot of tablets many are muscle relaxants. Those alone will cause weight gain, so hopefully I will now stop being so bloated. My puffa fish days may be finally over! That alone is cause for celebration, a big bar chocolate celebration I reckon! ;D