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. 

Settling

I’m happy to say I am now feeling much better from the flu, bronchitis and sinus infection! 

My body pain, spasms, limb locking etc have calmed down. 

I’m very lucky that I can rest as much as I need to. My son understands that I’ve been very sick and I have had to spend so much time asleep. I don’t feel wrecked with guilt so much these days and allow myself to rest and get as better as I can. 

Plus plus, only 9 days until pup arrives! He is sooo beautiful and it’ll be brilliant to have him as a member of our family 🙂 

I have an appointment at the eye hospital on 7th April for tests on my near blind left eye. 

Now normally I’m fine with examinations/ tests/ appointments I’m a ‘ok I need these tests so I’ll get through them’. 

I for once have an issue with these tests. 

I hate having my eyes touched/blown on/drops being put in them, and guess what three things they’re going to be doing..? Yes, all three of those things! 

It sounds ridiculous, my mate was laughing at me getting twitchy about these tests..

 “Stace, you’ve had cervical cell treatment, blood tests, brain tests, constant body prodding, tests on you legs, arms, back, everywhere.. And you’re freaking out about eye drops??” 

Ahah, yes it does sound silly but my eyes.. Being messed about with in any way makes me jittery. I can’t even touch my own eye let alone someone else probing them! 

I’ll do it because I have to, I need to find out what is going on, but I am not looking forward to it! 

No pun intended 🙂 

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 😉

Birthday and testing

I had a very eventful couple of days.

I will start with happy news, it was my birthday on Friday.

The big 34.. Though I really don’t feel any older which is the norm as you get older. Looking in the mirror expecting to see at 20year and instead you’re tracing lines and sagging skin.

I was totally spoilt on my birthday, my partner gave me my presents and card at 12am on the dot and a cake a few hours before.
My mum and sister visited in the morning, laden with gifts, a balloon and cake 🙂 then my brother came round and we all chatted and laughed into between cups of tea. It was brilliant.

I was able to sit downstairs while they were there and I was very pleased by this. They stayed a couple of hours then when they saw I was starting to flag left and I appreciated they did this and don’t ever take it personally. I went to bed and my son came in from work and I had more presents and a card. With a very funny verse inside ending that it was from my ever charming and dashing son.. He has a great humour does that man 🙂

I watched some wrestling with him, then got into bed and stayed there until the evening until my partner brought home chip shop food for me 🙂 I had a choice of him cooking or chippy, I chose chippy and pigged out. Twas gorgeous! 😀

I ended the day by watching a film cuddled in bed.

It was a wonderful birthday, and I was touched by how people put so much effort in to make it so, the cards, presents, and messages I received. Plus my doorbell was changed to the Happy Birthday song by someone, so it played the whole song every time it was rung. I have no idea who did that… ;D

I was struggling with one thing during my day, unfortunately a couple of days before the whole of my neck, both shoulders, my back and my left arm completely seized up. I couldn’t move these at all and it was agony. It happened at night and started with a slight stiff neck which spread very quickly. I was up all night but I waited to phone the dr until the morning and asked for diazepam as it’s what I’ve been prescribed for this before. I hadn’t had it this badly before, not my whole neck and both shoulders, I couldn’t swallow properly.

Anyway, the dr said she was gong to send the on call dr out to me though I protested I’d be fine after a few days on the diazepam. But no, she insisted and the dr came out.

So she came out and was extremely thorough and not happy with what had happened or how my body was reacting to her tests.

She did strength tests, putting her hands on the bottom of my feet as I pushed them. Well, my leg won’t have this and as soon as I pushed they went crazy, jangling, shaking and jolting all the way up my legs and into my left leg too. I looked like some odd kind of laid down river dancer!

She tested my pushing her hands against mine, which had the same reaction. Then as usual after any over use of my body I started pouring in sweat, my temperature went sky high and my body started shaking.

The doctor said she is not happy about how my body is reacting, I am too unwell and disabled for the conditions I have, I continue to deteriorate, she’s very concerned about my condition and I am showing all the signs of MS which I haven’t been properly tested for and should of been as soon as I started showing symptoms two years ago.

Even if it isn’t ms then she believes something else is going on and will do her best to eliminate several neuro and muscler diseases I could have.

So I am having an MRI spine scan, lumber puncture and neurologist appointment ASAP. She’s going to try and push this through and speak to my doctor about how concerned she is.

I got a lil choked up when she said I shouldn’t be living like this, I’m young I should be out working, enjoying life living instead of living as I am.

I really don’t know how to react. I’ve been told over and over I’m deteriorating, I’m ‘too’ unwell, it could be MS, or other conditions.. It’s kinda become second nature for me to shrug it off and have tests etc with no concerete results.

Plus, as I said to the dr, ME is so close to MS in symptoms and saying I am too unwell for me to have ME is derogatory to me and others that have ME.

I appreciate her honesty, her drive to help me and have me pushed up in the queue to see a neurologist. Her opinion that I’ve been lost in the system and not looked after or treated as I should be in terms of not doing tests I should have had. Or support from specialists, ie the pain clinic not helping and leaving me to live in agonising pain.

She’s a brilliant doctor, very stern if you’re trying to fob her off but so nice, efficient and trustworthy when you’re unwell. If she says she’s going to do something, she will. So I await until Tuesday and my phone appointment with my usual doctor to see if anything is happening.

In the meantime the right side of my neck is a lot better, the left side not so much. I’m trying not to dwell on it too much, I’m adapting to not using my left side and moving in such a way I look like a robot… Hehe :)!

It’s odd how you get used to these things, your symptoms and new ones springing up and testing your ability and strengths. I compensate by finding ways of using my right side more, not getting too frustrated by it and making jokes.

After all, fighting against it doesn’t help and if you can laugh at yourself then it makes things that lil bit easier 🙂

Results

I’m very pleased to say I had my results and apart from my muscle swelling off the chart and really high white bloods cells still, they all came through clear! 😀

I phoned the hospital who told me my results were through but they couldn’t tell me them, it had to go through my doctors. So I phoned my doctors and got them to phone me yesterday morning, with the good news.
I am relieved, and now can look into pain/muscle meds to hopefully help me. I am researching different meds, it’s crazy I have to do this but if I didn’t I wouldn’t get them.

I’ve been rather unwell this week, I hurt from head to toe, my skin feels so tight and unbending I can hardly move properly. I’m still half blind too and the two week pounding headache continues.

Things are difficult at the moment because of this, any movement makes me bite my tongue to stop the urge to groan aloud due to pain. My constant headache and eye sight is making it incredibly hard to think or read, hence no post yesterday.

I was talking with my father and he was saying how there must be something they can do, they can’t just leave me this way. But the sad truth is, they can and will.

This doesn’t mean I will give up though. No way. I will research all drugs, treatment, foods etc that have shown to help and decide which ones to discuss with my doctor. I have no specialist appointments until late September and there is no chance that I am going to wait that long for some kind of relief.

Chronic conditions are so neglected, patients are neglected and told ‘there’s nothing we can do’ . This isn’t good enough and I refuse to be told there’s nothing more they can do. I will bug and bug them until I am satisfied all that can be done will be done.

My body may not work properly, my brain might be confused and stutter, I may be bed bound but I will not be left to rot in my bedroom. I will do and try anything at this point, even if that means using valuable energy and body functions.

I’m exhausted just writing that! Ha, but hey it’s worth it. At least my hands are being kind to me at the moment, I can still type 🙂
I am very happy about my results and feel positive about getting the help I need. My doctor is brilliant, I am incredibly lucky to have her and she is always happy to help in any way she can.

In other news, my sons girlfriend had her article published in the speakers corner section of our local paper. I will retweet the post on twitter, I encourage you to read it! It’s brilliant, and I’m not being bias 🙂 it may be a bit odd to say but I am very proud of her. She is an incredibly smart clued up 19 year old, and her writing skills show this. You’d never believe an adult if later years hadn’t if written it. My mum bought a few copies and gave one to me, it’s definitely one paper I will keep! 😀

Another appointment over with

I didn’t blog yesterday as I was feeling really unwell.

My home assessment went well, I think! She arrived at 9.30am which I appreciated, not keeping me waiting for hours.
She was really pleased with all the photo copied letters and said they will make it so much easier during the descion making, and they will keep them on file.

She asked all the same questions that the form did, and a few of the answers were different as my condition has changed since I filled out the forms in February. But I also had proof of this and other things, such as I use a wheelchair, have and am deteriorating, my neuro problems and bedroom living through my doctors letter.

She did a slight medical at the end, but said she wouldn’t make me do the walking ones as it’s clear I can’t do them. She did sensitivity touch tests on my arms and hands, apparently I only felt a third of them. Then started doing them on my legs. Well, they were not having that. As soon as my leg was lifted off the floor they went into mad spasms that I then had all day, but she stopped straight away and said shall we try the left one. Of course that one started too! She left my legs totally alone and did it genuinely not as in, ohh you won’t do it but I can see you’re bad I’m not causing you more harm.

Then I had an eye test with similar cards as an optician but as my left eye has only had partial sight since Saturday that didn’t go great either. But ’twas fine and she understood.

Over all she was understanding, very empathetic genuinely so and very sympathetic. She was saying how isolating my life must be, how she’s keeping her fingers crossed for my claim and my home move happens really quickly.
She was not the dragon I was expecting and although she was here an hour and a half it didn’t drag nor at any point did I feel she was over bearing or not believe me.
So just the wait now to see if I’m accepted, it can take up to six weeks so I will have to just be patient, the worse of it’s over.

My eye pain was pretty bad yesterday, which caused a massive headache and then my pain kicked in and my muscle spasms due to the exam. I took myself to bed and eventually fell asleep until the evening, waking up feeling a lil better but still not great. So I was up until quite late, well early in the morning until the symptoms eased enough to enable me to sleep.

I have no appointments today, yay! Tomorrow is my x rays, ultrasounds and bloods so I’ll be at the hospital for a few hours. But that’s tomorrow, today I am taking to rest and recuperate a lil. Then after Wednesday it’s just a vitamin D injection appointment and that’s it for a month or so. I’m looking forward to the breathing space, it’ll be nice not to be constantly at the hospital and not be constantly examined and tested on 🙂

Reading again and again.. and again

My backache has eased, thank goddess may I add as it was becoming a real pain literally.

I had a nurse call me from the rheumatologist yesterday morning, I will admit to my heart stopping for a second as I had only had tests done Monday and it was only Friday. Luckily it wasn’t the results but to explain that the fridge my bloods had been stored in had broken down overnight and they had lost my bloods and I needed to have them re done. What a bad stroke of luck! But I wasn’t too bothered by it, I must be one of many who had their blood stored and the hassle of having to sort the tests all again must be a nightmare for the staff. I said I could go in on Thursday to have them done,as Wednesday I was having my x-rays. I wouldn’t normally have two appointments so close together but I need to results to be through by the time my ultrasounds are done so I can book another appointment with my Rheumatologist. So I need to do them close together and it will be worth it in the end.

It’s another hot day here, which my Romanian genes do not like at all. My body does, as it swelters on my electric blanket with the sun burning through the windows, but darn it my ancestors came from the mountains! I do not like the heat at all, if I had a choice I would live in wintery conditions all year long happily snuggled in blankets with darkness outside. But hey even England gets a summer, as sparse as it is so I had better get used to it and the disgusting excess sweat I am producing doing until glorious Autumn reappears!

I have started trying to read for longer periods of time. I managed quite a few pages of a very well known and well read book I have had for years, I must have read it four times making this the fifth. Now I got a bit lost after awhile as I kept forgetting what I had read and lost the story line. This to someone who always had up to three books on the go at the same time is not only incredibly frustrating but also a totally alien concept to grasp. By the time I was 9 years old I had the reading and understanding of an adult and I was taken off of children books in school and allowed to bring my own in as long as they were suitable. Many a time I brought in a ‘suitable book’ to show the teacher, and a secretly stashed one in my bag that would be my actual reading during quiet time in the library,  the teacher never checked on me and I hid in the alcove of the library so as not to be seen. So this regression has been difficult on many levels but I am determined to keep trying and training my brain to keep old of information I want stored in it. If I have to read a page 20 times then I do, I will get there in the end, through hook or crook darn it I will! 🙂

 

 

 

Rhumetologist

My rhumetologist appointment yesterday went really well, and my consultant was so good! I was saying to the nurse after how brilliant he was in terms of being so thorough, kind, taking time to make sure I was happy with everything and if I had any questions, and she said he is the top consultant!
Anyway, my bloods showed my white blood cells are still really high and my inflammation blood results were off the chart, the number 32 was literally flashing red on the screen which was amusing. He said I must be in agony due to this and it’s no wonder I am. After an examination, which involved my legs being lifted up and shaking uncontrollably, he ordered 18 blood tests which I had there, x rays and an ultrasound. He said there is clearly something going on but he won’t surmise until my results are back. I was happy with this answer, he didn’t try fobbing me off or using medical terms that I needed to look up in the dictionary after!
I have my x rays next week, and it’ll be upto three weeks for the ultrasounds, but as soon as I’ve had them I need to phone the hospital and an appointment will made to see him.
All in all im happy with how the appointment went. O.k. I didn’t get any definite answers, but just knowing that my tissues and muscles are off the chart swollen helps me understand why im in so much pain 24/7. A lot of acceptance is understanding why, so having this understanding helps me accept what’s causing it more. Within four weeks I should have clearer answers but I’m happy to wait that time for them.

I managed to sort the council fiasco yesterday. Apparently the letter was only sent to give me my bidding number and the lady said it says that on the letter. She got rather uppity when I said it didn’t, and that there was a separate letter about home swapping wasn’t sent, they hadn’t sent one. Well I wasn’t having that, I told her to check her computer as there would be copies of the letter and I would hold the line while she did. At first she said they didn’t keep copies.. Which is total rubbish, so again I said check it or put me through to her manager ad I had her name and I’d let him sort out the situation seeing as she was unwilling too. She looked after that, confirmed id had the letter and said they’d made a mistake.
Short story is they’re redoing my whole claim which will take upto 8weeks. Two hours on the phone it took to sort everything but hopefully now it will be and I can get on with finding a suitable property.

It’s boiling hot here in Brizzle, I find the heat helps ease the pain but my bedroom is like a sauna! I ordered a stand up fan and my father brought it round this morning. The relief is unimaginable, from it being so hot it was hard to breathe to now laid here with cool air is brilliant!
I’m happy to spend the morning resting in bed, surfing the net for new ways to help ease muscle swelling as my fan sweeps cool air over me keeping me cool and unsweaty.. Cleopatra may of had people using leaves as fans but having a proper one makes me feel as much as a queen as she did.. ;D

In hospital

Well, yesterday didn’t turn out as I expected. I was up in the middle of the night with terrible headache shakes and head lapse. I lost the sight in my left eye for an hour, which was unpleasant. I managed to doze at 6am ish and woke at 8.30am to wait for my doctor to ring. She rang at 12.30 which was due to there being a mix up in my phone number. I told her of my recent symptoms and them becoming worse and the blindness, and she said I need to go to a&e as she had suspicions I could of had a mini stroke or a lead up to a stroke. Luckily my Father was with me as he had dropped off my meds and we had been nattering.

My Father worked as an a&e porter for 10 years until last year so knows almost everyone there. I was treated well, had a line put in a constant checks from nurses before seeing a consultant and Dr. They were concerned I was unwell, but as I pointed out im like this everyday it was my new symptoms causing the problems. After 4 hours I was taken for an x ray then put on a ward. I know the lady two beds down from me, she had been ay my school! Small world eh! Anyway another consult came to check me again, did tests and said I need an MRI scan and MRI spinal scan to check all was ok plus a lumber puncture. The problem being it could take til next week if I was an in patient and few weeks if I was an out patient. I opted to be an out patient as I said to him, being in hospital with the lights, bed noise etc would really aggravate my ME àn Fibro. I would rather be in my ow bed in my own home. He understood and got a nurse to run more blood tests this time for possible other rheumatoid conditions.

So after 7 hours of poking, prodding, tests, and fussing I went home late last night. They’re not sure what is wrong, whether it’s my ME or Fibro or both starting to develop these new symptoms or something new happening. My white blood cells are high, indicating swollen/inflamed internal muscles. They are marking the MRI tests as urgent and hopefully it will be no more than two weeks to a month to have them done.

I’m just pleased to be home. My hand hurts from the line I had in, itd bruised as is my arm and the top of both arms from the blood pressure wraps. I bruise easier these days and I generally feel unwell and in pain. I was treated really well up there though, the nurses and staff couldn’t of been more accommodating or helpful. And the consultant isn’t just going to fob me off with the usual lumping it to ME or/and Fibro which is great, so many do that.
I will be resting up for the next few days, doing nothing I don’t have to. Yesterday wasn’t a pleasant day, but I can now see it as being beneficial in the long run due to the MRIs. Oh and I’ll be seeing a neurologist too, I forgot that. The most thing the consultants were surprised about is I hadn’t been tested for other things like MS, other muscle diseases and I hadn’t seen anyone yet about the ones I had. I explained that I was due to but had had to wait for five months for the appointments. They weren’t impressed and will put my MRIs and neurologist appointments down as urgent.

All I can do is wait and see what each test shows. If it is somethingmore on top of my current conditions then I will deal with it as and when. I can’t spend the next month worrying about it, there is a lot going on at the moment, what with the ESA outcome, pain clinic, rhumetologist appointments, my housing and pip. I will think about it every now and then, that’s only natural especially for someone like me who likes stability and knowledge of what’s going on.
I wont be totally at ease until it’s all sorted but I won’t worry and get myself in a tizzy about things. There isn’t much I can do about it s

o I will put my new patience to practice and it’ll all come out in the wash eventually 🙂

Help comes from the most unexpected people

I have had trouble writing the last few days. Not because of frozen fingers, I am used to that now. But when I type I am increasingly starting to type words out of sequence and this is very odd. I am either writing the word backwards or in a jumbled mess with the letters all in the wrong order. I have spent more time correcting words than writing anything the last few days and I am a little puzzled by it. I am guessing it is a neuro thing, my head has been fizzing none stop the last week and crackling more and more even without turning my head. It feels as though I have hundreds of fireworks fizzing in there, you know the moment before they explode that fizzing crackling sound they make? That is what is constantly filling the base of my neck and head. I don’t have any doctors appointments lined up and to be honest what can they do, I am already on the highest Gabapentin limit of three tabs three times daily. I am still phoning to check any cancellations coming up so I can see a Neurologist earlier than June but no luck yet. When you have chronic conditions there is only so much a doctor can do no matter how good they are. My doctor is brilliant but admits that she can only do so much to try to help lessen the conditions impacts on me because they aren’t curable. We get put into specialist hands who also then can only help ease symptoms and once they have done all they can then you are left on your own to deal with things. I could phone my doctor and explain my new symptoms but I know nothing will come of it, it will be noted down and that’s it, I am left to deal/cope with it the best I can. I prefer not to be constantly in contact with doctors etc but I do sometimes think I just want something to stop it all, the symptoms, the deterioration of my body the constant pain and barrage of things that happen daily to my body which I cannot control. But until they find a cure I know I can only do what I feel best helps me and my symptoms.

I have always been a very private person, never one to talk about myself or my life. This blog is the only place I do so and I do find it helps. But there are many people who know me that didn’t know I was unwell, apparently they just thought I was busy or being quiet and missing me when I went out. This now isn’t the case. A good friend of mine kept being asked where I was by people in our local pub and around the area. As I said before in a blog, I have lived in my area for 16 years and am a familiar face. Well, he kept quiet and didn’t tell them as he knows how private I am and was hoping I would get better which unfortunetly hasn’t happened. Anyway, when I was out in the wheelchair last month going to my opticians appointment I saw many people I know and the shocked looks on their faces. So it was out that I am unwell, and the lovely thing is people have been great and my friend has convayed to me their best wishes and to get me to the pub and get me drinks in til I explode from coca cola. Also there are many offers of help and support if I need it. I was and am very touched by this and yes I live in a rough neighbourhood but people come together and help each other out when times get rough. A very old fashion but lovely way of doing things.

I didn’t hide my illnesses because I was ashamed or didn’t want to be seen, I was trying to cope with them and how they were turning my body and life around 360. I shut myself away yes, but that is how I tend to deal with things until I myself come to terms with something. And well, I couldn’t go out anyway so shutting myself away was something that also happened because I pyschically couldn’t leave the flat. I have never had loads of friends, but only a handful that I trust and have stood by me through this last year. But I know a lot of people to say hello to, or chat to in the local shopping area, pub, corner shop, lifts etc and know a lot of people as their children went to school with my son. A bunch of us used to chat at the school gates and help each other out if one of us couldn’t pick up their child from school because of work, appointments etc.. one of us always stepped in and made tea etc and looked after their child until they could be picked up. So my dissaperence from our area was noted, which I didn’t think about at all while I was in my bubble of illness. It is good to know that if I do get out there will be people who won’t stare, make comments etc as they now know my situation and won’t feel like an alien object and can be my usual self, just now residing in a wheelchair.

I have found that the people who I thought would stand by me haven’t and the ones I never thought would stand me have. Another lesson that having chronic illnesses has taught me, expect the unexpected because that is exactly what you will get.