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. 

🙂 

Crashing Christmas

It’s been a difficult few weeks, well, couple of months to be totally honest. 

I had a massive crash 6 weeks ago, I had lost the use of my left arm and shoulder again and my body was in constant spasm. 

Then I got up in the night to go to the bathroom, and my legs felt like jelly, and really shakey. 

I managed to get to the bathroom, and then back to my room.. Despite the now tingling all through my legs and back. I shut my bedroom door stepped forward and ‘bam’ I went down like a large bag of potatoes! 

I had lost total feeling from my waist down and couldn’t move that area at all. 

I will admit, it was very scary. I don’t often feel scared about my symptoms but this, this was a massive shock and with only my right arm working I felt real fear. 

I was slouched on the floor for an hour, slowly inching my way to my bed by pulling myself with my right hand. 

When I got into bed, I was absolutely exhausted. I reached for a drink and my pain meds and diazepam and tried to relax my body as much as possible. 

About 4am I text my mum to ask if she was up, and she was as she’s a very early riser. I chatted to her on the ‘phone about what was going on and made arrangements to get to her house so I could be cared for until it passed or eased off. 

I was there for two weeks, and I slowly got my legs back to walk. I was cared for so well by my parents and sister, and I am and always will be incredible greatful for them and their total support, help and love. 

Since then I am losing the use of my legs on and off and the spasms, pain  and cramps are in overdrive. 

This flare and relapse has put me back months, I’m much better than I was but my body is screaming at me 24/7 and I feel these symptoms, the loss of feelings in my legs is going to become a part of my illness, as all my other new relapse symptoms have. 

So again, I’ve had to put more measures in place to help me through this and seriously think about my future. Like moving and getting an electric wheelchair after I do so I can not stretch and lose the use of my arms by using my self propelling one. And keeping my mobile with me at all times in case the feeling in my lower body disappears again. 

And with Christmas and my sons birthday just around the corner, I’ve been focusing on getting better so I can enjoy and take part of the day. For my sons birthday rather than Christmas. 

I find this time of year can be very depressing when on social media. All the pictures of Christmas parties, social events, tree and decorated homes. 

Don’t get me wrong, I’m happy they are happy and can do these things. But I will admit that it makes me feel left out, look to the past when I was well and did join in with all these things. 

I’ve only just got into the Christmas spirit, and my son hughly contributed to this by encouraging us to put the tree up together. 

That was a beautiful time, spending that time together,  I loved it and I’m glad we put it up as it does make a huge difference and creates a Christmas air 🙂 

I think that many people who are unwell struggle more at Christmas time because there is so much to do, but you’re unable to do much or any of it. The pressure is huge and others can forget you are sick and assume you will sort a lot, which causes huge strain for our bodies and minds. 

We don’t suddenly become well because it’s Christmas, although I would love that Christmas miracle! 

It’s a day that pushes our bodies to the limit and causes huge recupusions, including  severe flares and relapses. 

I know I have to be extremely careful and not push myself between now and Christmas, because darn am I missing out on my sons birthday and then Christmas Day! 

Pace, pace, pace, pace.. Will be my constant repetitive motto, and being sensible and good for once! 🙂
 

Not just a sick person

It’s been quite a while since my last blog. 

I had a very very bad few months where I was in constant loss of mobility, limbs, sight and in turn myself. 

I’ve had numerous doctors out, phone appointments, medication to calm my muscles and symptoms and still no real answers of why this has suddenly started happening to such an extent. 

I’m used to having loss of my arm, shoulder, leg and even sight in my left eye but never had I woken up gone to get out of bed and simply fallen on the floor as I had massive cramping in my lower torso and legs then total numbness. 

Four days I couldn’t walk, move without my muscle simply tightening more and more until I felt like a rope hoisting massive boulders from a dam. 

It was a huge shock, and still is to a certain extent though I am getting used to it now. 

Yes, that may sound odd.. I’m getting used to total loss of mobility and movement for days at a time. But it’s true. 

It’s funny what you can get used to, things you’d never think possible or even imagine could happen. But you do, quite simply because you have too. 

To not get used to it is harder, to deny, ignore or even not accept it makes it so much harder. 

I decided long ago to try to work with my body, with what was working and to not fight against something that isn’t possible to fight against. 

I used to rage, throw things, rant at myself and body because it is useless at times.. Until it was pointed out to me I was doing myself more harm than good. Mentally and physically. 

So I tried to work with it instead, and not to harm myself even more. 

Yes, I still get days I am angry and shout at my body for being so annoying, not working properly and get frustrated at my inabity to live and move like a ‘normal’ person. But those days are becoming less and less as I accept this is how things are for now and I need to accept it and focus on what I can do instead of what I can’t. 

With this determination I have started a short history and a psychology course at the end of this month. 

They’re both very simple to what I’m used to but that is why I chose them, both subjects I am very familiar with and know enough about to not have to work too hard. Before my illnesses made me really sick, I was training in Genealogy and studying to be a counseller/psychiatric therapist. 

I miss it, I miss the goals I was working towards and have decided to do something about it, no matter how hard or long it’s going to take. 

I’m sick of being just a ‘sick person’ my life revolving around my illnesses, meds, bedbound blindness state. 

I need to be more than that, need to feel like a person not just a sickness. 

Yes, it’s difficult, I’m still half blind in my left eye, my hands go numb and muscles twist in pain if I type too much. Remembering things is a nightmare, I have intense headaches and facial tics after just half hour of study. But.. 

But is it as difficult as when I first become unwell? Is it as difficult as losing my mobility for days at a time, my sight my ability to function? My guilt at not being able to be as I was, unable to be there for my loved ones as I once was? To wake each day not knowing if I’ll be able to move, breathe, talk, see properly on that day? 

No, no it’s not. 

I figure if I can get through that and the terrible days of the last two years when I was literally laid out by my conditions then I can at least try to do something productive for me. 

For me to do these courses and then the next ones and the next, to look to the future and think I can have one that isn’t just sickness and depression. 

To think I could qualify and work from home, do again a job that I am passionate about. That I can do this study from my bed with my laptop. 

That’s in the far far future, I know that. I’m am very realistic about how much hard work it’s going to be, how much it’ll put a strain on me and my body. 

But just to have that hope, the hope that I can become me again pushes me on. A different version of me, but one that is better than my ‘well’ me, with all the appreciation and good changes in my personality, because my conditions have turned me into a better person. 

And at 35 years old I am deciding that I will have a future, despite my disabilities inspire of them. I have a long life ahead of me and I want it to mean something. 

To not just be a sick person, but to be me. 

🙂 

Natural medicine

I’d like to start this blog by thanking everyone who read, liked and commented on my last post. 

I was overwhelmed by the response and very touched, thank you so much 🙂 

It’s been a lil while since my last post as my eyesite and neuro problems have been pretty bad. It’s difficult to concentrate or think to write anything longer than a text or picture post. My mind gets so fuzzy and confused. 

I’ve also been on more antibiotics for my flu that I’ve had for months and sinus infection. My dr has put me forward for a sinus tissue scrape op as my MRI also showed mass tissue in my nasel tubes. I’m willing to have it done, no matter how much it’ll set of my conditions. If it stops my constant sinus infections and flu I’m going to give it a whirl. 

I have decided to try natural remedies in the hope they can ease some of my issues. 

I’ve started eating really well again, Greek youghurt too and I haven’t eaten youghurt since I was 10! 

I’m starting by trying to eat foods that are good for energy and nutrition. I have found chia seeds too, just a spoonful on anything I eat is apparently really good for you energy wise, something I could really really do with more of! 

I am also going to try acupuncture for my pain, I’ve researched and found a place that does it for ME and fibro so I will book the appointment in a couple of weeks. I can’t do it right now as my body is too poorly to get there, but I’m determined to try! 

I don’t think by changing my diet I will be cured, so many people say how they’ve been ‘cured’ by healthy eating.. If it really was that easy then medical science and professionals would be giving us fruit not meds and there’d be no one suffering with the many different chronic illnesses out there. What a wonderful world that would be! 

I’m doing this to try and get more body energy and ease my pain which is through the roof at the moment. 

Every millimetre of my body hurts day in day out at the moment, from my toes to my hair roots. My shakes are back and my body muscles so swollen and painful, I’m now bruising outside on my skin from the pressure inside. 

I’m better at working with my conditions these days, listening to my body and not being silly trying to do things that I’ll suffer from. But when you’re in this much pain and muscle locking anything you do is too much. The act of getting into bed, or moving at all sends the pain and muscles screaming through your body. 

It’s ridiculous, maddening and it’s depressing. 

Chronicpain is difficult to understand unless you have it. The ‘normal’ pain people have, such as achy, hurt yourself, pulled a muscle pain is just the tip of an iceberg compared to chronic 24/7 pain. 

It affects everything, your movement, sleep, eating, toilet trips, dressing.. Literally anytime you move or breathe it hurts so badly your body can shake and you can be sick from it. 

I’ve had pain for years, which  now I know it was due to my chronic conditions. My doctors now think I’ve had these conditions for at least ten years, they got worse over time then bam, my body had enough and  disabled me a couple of years ago. 

I thought it was normal, the every day aches and pains I had. But my pain nowadays compared to then is minute, and I would love to swap back to that. 

Hopefully my new diet will help. I’m not expecting miracles, but it’s worth a try. I’m at the point I will try anything to help now, well anything within reason. I don’t want scammers or people asking for money claiming their remedies will cure me! No thank you very much, you can stay out of my mailbox and away from my blog. 

I’m unwell, not stupid. 

🙂 

Neurologist part 2

Due to my worsening eye sight and neurogical problems I had an emergency appointment to see my neurologist on Friday. 

Now last time I saw him, it did not go well. He was patronising, arrogant and refused to do anything until I had cut down my meds. 

So the thought of seeing him again wasn’t pleasent! But I tried to stay positive and was determined to be open and honest with him, to say I need help and if he wasn’t going to help then I would refer myself to someone else. 

Well, I have no idea why but this time he was absolutely lovely! It’s as though he had a personality transplant or an evil twin that saw me last time! 

He was very honest and I appreciated that. He wants to help, and has put in for me to have an MRI spinal scan and any tests I think I may need in the future. 

He said.. “I believe you are very unwell. That you have chronic fatigue, ME, a neurological disorder brought on by my nervous system, Fibromyalgia, Endometriosis. I can look at people and know if they’re ill or not, I look at you and know you’re very unwell. That your immune system, rheumatoid, nervous system, muscles, well, your whole inner system is in constant turmoil and has made you very unwell.” 

I was shocked and said I appreciate him saying that, and is there anything I can do or he can suggest that will help me? 

He was very straight forward and said, there’s no cure for what I have. They don’t understand it enough, why it happens or how it happens. He is going to refer me to the Bath Specialist Pain Hospital and hope to ease my chronic pain. There is too much wrong inside to ‘fix’ me, all they can do is try to make me as comfortable as they can and I need to think about my future. To have carers in place, someone there to help care for me. Not to do major housework, any work that makes me exhausted. To move so there are no stairs, to do anything that will put less pressure and worsening affects on my health. 

He can’t say I will ever get better, that I am getting worse and that could ease, I may feel better for awhile, and my body calm down. But he’s not going to give me false hope that this will happen. 

He asked me to come in and see him in a few months time to see how I am and if there’s anything I need that they can help me with. He even pushed me in my chair out of his office after the appointment! 

I left feeling relieved that he now believes me, that he was totally honest with me and although he can’t cure me he will help if I need it. 

So, that’s that for now. 

I have to accept I’m not getting better yet, or ever. That I need to seriously think about getting a carer soon, need to move and have a place big enough for total wheelchair access, and think of anything I have to stop doing to help my body not be put under too much strain. And things I can do to help. 

The worse thing is telling people. For myself, I accepted I am pretty unwell as I live it every day and my worsening symptoms and new issues are very obvious to me. I know this will upset loved ones, and for me that is the worst thing. 

I guess, we always think there’s something in medical science to fix us. We expect to go to a doctor/proffessional and have them give us pills or treatment that will cure us. 

Chronic illness doesn’t work like that. It’s so complex, so individual that they really don’t know enough about it to even know where to start to help it. 

All they can do is try to ease the symptoms, and as the neurologist said “make you and your life as comfortable as we can” 

He also said that I really need accept that bed rest means bed rest. Not getting up doing housework, cooking, washing etc and resting in bed in between. Bed rest means total rest, your body is telling you to stop, rest and if you don’t you will suffer harder and longer. 

Habits are hard to break though eh! But I will start being better at looking after myself, asking for help if I need it and start seriously looking for new housing and a carer. 

Yes it sucks, yes I’m not happy about it. I don’t want to be like this, live like this, face the next lord knows how many years left of my life living this half life of severe illness and better days. 

But what option do I have? If I don’t accept it I will slowly but surely become bitter, angry and live in hate that this has happened. Which will solve nothing and make it 100 times harder. 

I will have days when I’m upset, frustrated, angry because I’m unable to do things so simple a child could do it. Definetly days when I feel I’m letting people down because I can’t be there for them as I should be because my body won’t allow it. Times when my legs and limbs don’t work properly and are swollen due to muscle and body pain. Blindness and constant headaches because of neuro problems. Days when I feel totally isolated and I can hear people happy and enjoying life outside while I’m stuck in bed unable to walk or move properly or without massive pain. 

Acceptance may take time, but it’s still life no matter how restricted. I wake each day and no matter how unwell I am, I still wake. I get to see my loved ones, spend time with them. Speak with them over phone or internet. Be in their lives and enjoy each new day as best as I can. 

Many people don’t get to do that, and I am grateful that I can. My life is very different to most peoples, but it’s still life. I am lucky that I still get to experience it no matter what condition I am in. 

🙂 

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. 

Dr on the warpath

I love my Doctor! 

I spoke to her on Tuesday and she got very annoyed and angry that I’ve still not seen the neurologist again as I was supposed to this month. That his letter to her dismissing my diagnosis’s and health and the meds and care I’ve been given was as dismissive as when he spoke to me. 

That my tests proved I’m half blind in my left eye yet he’s not seen me again as he should’ve done this month. 

She’s writing to the hosp asking for the next available appointment for me and tests and not specifically with him. 

The sad news that’s she’s leaving was a shock to me, as she’s been so good to me and brilliant at sorting appointments meds care for me. We chatted a bit about why she’s leaving and she’s not happy about it but has to due to personal reasons. I’m really going to miss her, not just as my dr but the friendship we’ve built up and nattering about non health problems . 

She’s promised to hand me over to another dr in the surgery who has some experience with chronic illness and also to talk to her about my history, current issues and that I need special care and home visits. Also that they will need to chase up ignorant ‘specialists!’ :,) 

I’m feeling happier that something is going to be done about my ongoing neuro and eye problems. My dr is asking for an MRI, CAT scan, brain probes and spinal scan. Hopefully this will give me some much needed answers! 

Plus, once these tests and results are done I can be seen at Bath hospital for pain and rheumatic diseases as an out patient not an in patient as was first arranged. She’s arranged it for me and I am incredibly greatful for this. 

So fingers crossed the next couple of months will be full of answers and the right care! 🙂 

Neurologist result

So, I had my letter from the lovely neurologist I saw last month ( the word lovely drips with sarcasm).

Apparently I do only have half vision in my left eye, black spot covering the upper part of my eye being the actual result.

So at least that shows I do have neurological issues.. As brainy as I am even I couldn’t of psychosomaticed that! 😉

It’s a relief to have the proof though, and he has asked my dr to do more sight and prob tests to see why I’m now half blind in that eye.

It’s ridiculous that us chronic illness sufferers have to have the stress of proving we are ill and not imagining things or are hypochondriacs on top of everything else.

It’s exhausting to keep battling ‘specialists’ to recieve any kind of proper care or belief in our illnesses.

It’s as though some people think we enjoy being ill, because yes I imagined my life and future to be 90% bedbound, in constant chronic pain, spasms, seizures and massive migraines brought on by loss of sight . To not be able to function, spend time with my son, family and the guilt that comes along with the inability to be there as you want to be.
Seriously, when I looked to the future I thought yup, that’s the one for me..
Ummm…
No.

The progress I am making at the moment is brilliant and I am hopeful, but at the same time fearful of that hope incase I once again relapse and am back to square one. That the hope once again is taken from me, leaving me in a state of such anger, frustration and betrayl of my own body.

But I will try to quash this down, remain positive and working hard and hit away the fears with my walking stick 😉

Back :-)

It’s been awhile since I’ve blogged, nearly a month which I was surprised by when I checked!

The last month has been one of ups and downs, well days and a few really good days and the inevitable really bad days.

Mostly I haven’t been able to write due to the worsening of the sight in my left eye.
It’s now almost two thirds blindness, and I’ve been suffering with terrible headaches every day, to the point of them waking me.

But I do not want to give up my blog, and this pita will probably take a few days to right but get there in the end 🙂

My legs have also been waking me many times at night, they twinge then lock, and become totally dead.
Massage and heat help to get them moving again but it takes an hour or two to do so.

As you can imagine I’ve not been sleeping well! I feel as though I’m sleep walking through most days, so tired and body weary with my headache blighting me.

I now haven’t had a period for 5 months.. No idea why and I’m definetly not pregnant. I still get the stomach cramps, weight gain and sugar cravings but no actual period. It’s all a bit odd and I’ll talk to my doctor about it next week. I don’t feel more unwell, more pain in my hip and stomach but the bleeding I was getting has stopped.
It’s an odd one that’s for sure!

But, I am not unhappy at the moment, I’ve actually been calmer in myself and more playful in my manner.

My son was off work for a week last week so I got to spend quite a bit of time with him which was great . He works so much that most days I only see him early in the morning or when he finishes at night. So being able to play console games, watch programmes together and talk was brilliant 🙂

One huuuuuge achievement I had last week was having lunch with my mum then doing some Christmas shopping. I am used to my chair now and saw lots of people I know to wave to or chat.
This is a huge achievement and was like a dream come true!

You know how I love Christmas, and with my sons Birthday just three days before, the festive period is my favourite month.

I am just waiting on 2 parcels to be delivered and ill be all ready for Christmas! My house is decorated with lights, tinsel and christmas items for the first time in two years! It may be a bit OTT but I do not care! I love it, and it makes me so happy 🙂

I hope all is well with my fellow bloggers 🙂 I aim to go through everyone’s blogs and catch up with them and you 🙂

Time slipping away like sand

I have been on another break from blogging, mostly due to my eyesight and 3 week headache.

Reading or writing has been difficult, and making both problems worse so I’ve been doing as little as possible.

It’s funny how time is slipping by, minutes turn into hours, hours into days, weeks into months without any knowledge of how it’s happening so quickly.

My ‘time lapse’ episodes are making time and days go by quicker than ever. When you’re losing several hours a day and night in the blink of an eye life becomes more and more surreal. I can lay there and know it’s lunchtime but in a second it is early evening with no knowledge of the hours in between. I’m functioning, I’m there physically, but it’s as though I’m going through natural motions and on auto pilot. Thankfully I’m not losing half the day everyday, but it’s still a few hours everyday. It’s as though I come out of a dream, slowly as you do when waking and then a state of confusion wondering what time it is or how it’s 4am.

I’m going to need to tell my doctor as the lapsing has become worse since the headache and non sight. It’s all day everyday, which is becoming a bit much.

Ah well, it could still always be worse I could have no head instead of a constant headache! 😉

I had my vitamin D injection last week. Straight into the muscle in my arm which I was not expecting! I’m thankful it wasn’t my bottom but jeez I nearly hit out with surprise! Much like a tetanus shot, it wasn’t painful for long but I did have a dead arm until the next day. I’m due for another one next month which I will definetly have, I’m really hoping will help my pain and muscle swelling.

Life continues to plod along otherwise. I had a letter on Monday apologising for taking so long making my pip decision but I will have one soon. Why they bothered to send me that letter in the first place I have no idea! Unless it’s to back themselves up by saying it’s taking time but they informed me it would be.. In my eyes its a pointless waste of paper, envelope and stamp!

I am planning a night at my parents soon. My father bought an electric orphapedic bed for use at their home, so I will look forward spending time with family and messing about with the bed! I know full well I won’t be able to stop myself folding, unfolding the bed via the switch.. I may be an adult but the child in me will never disappear! 😀