Coincidences

The nurse came round yesterday morning to take blood. While she was sorting through her bag she asked if she could ask what was wrong with me. So I said and she exclaimed that her Mum has Fibro but her Doctor doesn’t recognise it and she is left untreated. I said that I hear that too much, but it is now a world wide recognised serious chronic condition. We chatted about it for a bit and she asked my opinion on what to do. I advised her to change her Doctor and to a younger one if possible as they are more likely to have been taught about the condition. I said how brilliant my Doctor is and she asked what surgery I was at and which Doctor. So I told her and she said she would try to get her Mum in to see her. What a small world though, I was pleased that I could say her Mum could get the help she deserves and I truly hope she does.

I am still badly aching and paining today. After days of bad pain under my right breast, I felt and saw a very big swelling underneath. It is definetly a muscle, why it’s swollen to the size it has I have no idea. I cant twist to see if its also around my side up to my shoulder but I don’t need to, the pain is there and I am pretty positive it has swelled too. I will wake up tomorrow the Michealen Mans twin if I don’t go careful! I am not too worried about it, these things come and go. O.K not always, as with the Devils grip.. but I think it is just part of it. Or it hasn’t gone. I will continue to keep an eye on it, and will phone the Dr if it worsens. I hate phoning the Drs as you know and try to avoid it.

My partner cooked for us last night and I have to admit, he is a great cook. He made a chicken and bacon pasta ragu which was delicious, I even had seconds! It was the first meal I had for awhile again, my eating these days is all over the place. I can no longer stomach meals everyday, I now tend to eat little but often. From a couple of biscuits, to a sandwich anything that is small tasty and quick to eat. I hadn’t eaten since the previous afternoon when my partner cooked, over 24 hours without food. It is something that I do need to address, but I know that full meals daily make me sick and have found the little but often works for me at the moment. I say at the moment because like anything with chronic conditions, things can change very frequently. I take cod liver oil tablets along with my vitamin D and B. I don’t eat fish, I have never liked it but as a kid ate it mostly due to not wanting my Mum to have to cook seperate meals when she had enough to do already. But as soon as I moved out at 17, I stooped eating it and never have since. I am very aware Omega 3  is needed though so I take the suppliment and so far it has worked fine, I have no fish related illness.. yet! 😉

I made my first card yesterday afternoon, for my partner. Yes, it was a bit of a soppy one.. but I wanted him to be the first person I made one for as I do appreciate all he does for me. I can’t often do much for him, so when I can I truly want to and jump at the chance. Well, shuffle but the meanings the same :). I have always said relationships are give and take, not one sided take take. Mutual respect and partnership is important, I want to be equal with my partner not both struggling to be top dog. That wouldn’t work at all. We both know we love each other, respect each other and are equal to each other. I wouldn’t want it any other way.

It’s a beautiful morning here. The sun is already shining but it has a brisk coolness hovering about. That will disperse though and I reckon it will be a warm sunny day. I won’t be able to get out feel it, but the fact I will see how nice it is through the widows does perk me up. I do love early mornings sometimes, when the outside world starts to wake and bustle around. Early morning and late night are my favourite times of day, and I am glad I am up really early to enjoy this morning  🙂

 

Legs a kimbo

I didn’t have a very good night at all. My legs, which have been swollen and really painful the last couple of days decided to stop working for an hour. At around 3am I went to get out of bed to get my bottle of squash on y chest of drawers and I literally couldn’t move them, the only thing I could feel was massive pain, throbbing, vein pain from my knees down and all my veins stuck out again in my feet, legs and hands. I tried to move them but they simply wouldn’t, I couldn’t lift them at all and I have never had that before.I have no idea what happened, they are still very painful now and incredibly stiff. All my joints are. I am really hoping it was a one off because to be honest, it wasn’t pleasant at all. I don’t often panic, I have never been the sort to be scared easily but I was scared and a bit panicked when it happened. I have had numb legs, stiff legs, spasming legs and jolting legs but never not being able to move them at all. I will keep a close watch on them today and rest up as much as possible, hopefully that will help the pain and stiffness without losing feeling again.

I have hardly slept so I am also feeling extremely tired, grit eyed and have one heck of a headache. The fizzing and crackling is on full today, I cannot move my head without setting it off. I have also had far too many head lapses for my liking. I am rather fed up with it all today and this irks me as I was in such a chirpy mood yesterday regardless of my symptoms. Today I just wish they would hush for a while to enable me to get some sleep, or even a nap.

As I had a break from writing my legs again paralised.. so much for hoping! It lasted for half an hour and I am pretty sure it is going to happen again soon as my legs are so heavy, painful and my lower back is throbbing. I can stumble about using my stick but I am definetly going to stay in bed for the rest of the day only getting up to use the bathroom.

I have been thinking of starting a hobby, card making is in my thoughts. My hands get stiff and shaky but I might be able to do it on better days. I have been looking at cheap sets online and their are some very resonably priced ones. Also bracelet making. For years I wore loads of bracelets, rope, cord, bangled ones, and it will be good to not only make original ones for myself but more importantly others. I need something to occupy my mind when I am laid up like this, if my legs are refusing to work at least I can occupy and use my hands. You never know, this time next year I could be an expert and make it a part of my life. It would be great to make things for others and the design being from the heart and exclusive to them 🙂

 

Thinking, over thinking and changes

It’s been a good weekend so far. I have rested lots, eaten more and generally feel a bit better in myself.

As positive as I am about most things in life, I am far from the most relaxed, easy going and even tempered person a lot of people think me to be. I get very passionate about the things I believe in, also the welfare and care of people close to me and even people I talk to on social media sites whom I haven’t met but can understand how they feel. I had a terrible temper when I was younger, I shouted, screamed and threw things in utter anger and un ability of knowing how to get my point across. I couldn’t express myself properly and got so frustrated because of it. Having my son calmed it all down and I learnt how to be diplomatic and quietly but firmly put my point across. Why am I writing about this today? I am not a 100% sure but there is a part of me that is dwelling a lot on how I am, how I deal with things. How much being unwell has changed my way of dealing with things and how I feel about things.  I spend a lot of time on my own, due to resting, insomnia, painsomnia, not being able to sit in company for too long due to noise and light. So I go to my room and if the drunks in the park are being quiet or I am up most the night which is very often then I have a lot of time to think. Too much time really, constant thinking is no good for anyone. But it happens whether or not you want to, a thought will pop into my head and once it’s there I can’t ignore it so I dwell on it instead. Well, I do try to ignore it at times but that doesn’t last for long as it will continue to pop into my head until I deal with it. There is no distracting yourself doing anything, reading, watching t.v, housework, going for a walk, because these things are no longer possible. So I instead have to deal with the thoughts constantly swirling about, which sometimes is hard to do.

It’s an easy way for the dark thoughts to get through, to have them simmer in the background of an already dark cloud that is the loss of the things you can no longer have, the person you can no longer be. The future you had thoughts of being like, they all swarm around my head like an angry wasp hive. And sometimes all I can do is lay there, let them run through and deal with one thought at a time. Becoming unwell and daily fighting against the things inside you causing your illness with neither of you winning and ending in a constant cycle of battling against each other.

Illness forces you to face things, because you can’t run away from them or distract yourself and I don’t think this is always a bad thing. Don’t get me wrong, sometimes I often just want my head to shut the hell up and give me two minutes peace, but well, I really do talk to myself too often these days so try not to argue with myself and start down that road.. I think not being able to run, distract yourself makes you face your fears, happiness, reality and accept them. I know I have become a lot more less judgemental of people, not so quick to judge and pass them off before I get the chance to understand them and their predicements first. I am calmer, not becoming so impatient when a thing isn’t done to the standard or set time I used to expect. You learn to not obsess over the washing up not being done straight away, because the fact that a meal was prepared and eaten gives solice and renders the cleaning after not so important. The housework has to be done as and when, at first I used to get so wound up that the vacuuming needed to be done as the fluff drove me to distraction. Now I can wait until it can be done by whomever and not get so wound up. I am quieter, not because I am depressed for days or upset but because I have learnt a calmness within myself and towards others I never thought possible. I am kinder, more willing to listen and wait for someone to finish their opinion, sentence before rushing in and overriding them. I am more emotionally open, I tell people how I feel about them, things in general where as I used to bottle my emotions up and never let them be shown. I cherish things more, appreciate just waking up and being able to enjoy some time in the day that is pain free, no matter if it is just minutes. A few hours downstairs in the company of my son, family, gives me happiness for days after. The simple act of cuddling up to my partner and just enjoying the silly conversations or comfortable silences we share, that we are able to have and share is so special to me. There are no demands, no having to think of the next hour because by that time I could not be able to curl up and cuddle but only lay still in pain. It’s enjoying the moment, because that moment can be gone in an instant which makes the moments extra special and important.

I doubt I would of ever have changed like I have unless these illnesses had become part of my body, my life. I cannot think of something that would take over my body making me trapped inside my own head and making me deal with issues I had never had to before, or change my life and out lookout so drastically. I can honestly say, in a strange way I am thankful for the conditions I have for making me a better, more understanding, appreciative person. I may not like having them, like the fact that they have disabled not only my body and mind but my life. There are so many reasons to fight against these conditions, to curse them. But being able to be thankful for the good changes must be acknowledged and understood too. If I can only ever say I am thankful for the good it has caused me to become as a person and emotionally, then that will be enough to help me not only accept what has happened but to sleep more peacefully at night.

Guess who’s back, back again :)

So, I haven’t written my blog for most of the week. I always said to myself that I would keep writing everyday unless I was too unwell not to, and that is what happened. I was struggling last week with a sinus infection and Devils grip virus, I wasn’t getting any better but worse. I was very unwell Sunday night with really bad sickness, shakes, pain and massive temperature. I spoke with the Doctor and it seems as though I either had had a bad reaction to the antibiotics or the antibiotics were reacting badly to one of the meds I am on. They gave me new ones and I do feel better now thankfully, no sickness or shakes. My M.E, Fibro , sinus infection and Devils grip all escalated because of the reaction and with the reaction on top of it all, well, lets just say it was truly, agonysingly awful and it’s not something I want to happen ever again. It’s nice to be in the land of the aware again!

I had a letter on Tuesday saying I need to have a medical assessment to prove I am unwell before they grant me PIP. I need to bring all my meds, any letters showing proof of doctors, consultants and hospital visits, any aides I use and confirmation of my illness from my Dr, hospital or consultant. As the Doctor phoned me Tuesday to see how I was and if the sickness had stopped, I spoke to her about the assessment and she was astonished they needed proof and wasn’t happy about me having to go there at all. She is going to write me a letter to give to them outlining that I am unwell, 90% housebound and that I no longer go to the surgery but have the Doctors/nurse come out to me. I am thankful for this and again count my blessing that she is so brilliant. Along with my specialist confirmation of him diagnosing M.E and Fibro in January, my upcoming confirmation letters for hospital appointments in June and my wheelchair I am hoping they will see I am not faking. I do feel angry that I have to prove myself to them, something I have never liked doing to anyone. How the heck do they think I am faking when I wrote all my symptoms, appointments down and along with my consultants letter and sent it to them in February! But no it’s not enough and I have to physically show them I am unwell by going to the appointment in my wheelchair and in doing so will set me back health wise for weeks as getting out anywhere causes my body to react badly. Grrrr it’s ridiculous! But I will go armed with all my ‘proof’ and hopefully then they will believe me. If they don’t they will stop my ESA and send me looking for work, something that is an impossibility at the moment. Its on the 19th May so at least I have time to prepare everything and calm down!

My Endometriosis has also decided to rear it’s head. I said a couple of weeks back that it had taken a seat back since the M.E and Fibro became worse, but it’s back with vengeance now. I wish I had of kept my mouth shut now! 😉 It is most probably due to everything escalating and it felt left out, ahh we MUST show our self  to let the other conditions know we are still here lurking in the background…! I for one am not amused. I could really do without the stomach pain, pain in my hip, womb, down my right leg and massive bleeding. But it’s here so I am dealing with it, hot water bottles, painkillers, and a few daily cursings are helping.

Today and the next week or so I am having to be very careful to rest up, keep an eye on the infections and make sure it gets better and doesn’t get so bad again. The new antibiotics seem to be working, so that’s a relief. I think a bit of music played quietly, a few chocolate biscuits and tea with extra sugar for strength right now should help my recovery along nicely. 😉

 

 

 

 

Looking as bad as I feel

It always amazes me that people say you can look o.k even though your’e very unwell. Why? well, because since becoming unwell I have looked ill and it very much shows on my face. This week with the viruses on top I look like nothing on Earth, I am white as a sheet, massive bags under my eyes, which are swollen, my face is drawn and my mouth is peeling. Along with the unwashed hair, if any Directors were looking for an extra for a alien film, I definetly wouldn’t need a costume! Over the last year and a half I have noticed it show more and more on my face and body and do despair over it at times. Most of the time I couldn’t care less, but sometimes I will look in the mirror and think, oh dear.. My skin is now bad too when I always had good skin, it resembles that of a teenagers going through puberty in its spotty and dry state. I never got spots as a teenager, I think Mother Nature has decided to curse me with them now. It isn’t all in my head either, even my Doctor say’s I look unwell and the one that came out on Tuesday said ” I can tell you’re unwell just by looking at you”. Cheers then Doc, but it proves it isn’t just all in my imagination. Is it just me that is cursed with this or do others suffer with having their illnesses show on their face? Maybe it is just me, but I can’t believe that is the case.

It’s been a very quiet weekend, with me still feeling like nothing on Earth along with looking like it. I am beginning to wonder how long I can actually survive without proper sleep as this week I have had about 10 hours unbroken sleep all together and two nights that I haven’t slept at all. It is definetly starting to tell, my head feels heavy, tired and I feel listless and as though my eyes are full of sand. Yet I still cannot sleep. I am either up due to pain, spasms, sickness, stomach squeezing, joint locking and headache or my mind being over active and I can’t settle or relax into sleep. I have never slept well, I managed for many years on around 4- 5 hours a night,  I did get better for a few years but now sleep is something I only grab in snatches. It is actually something I now hope for, to sleep for six or a glorious 8 hours without waking at all. I don’t even mind waking up ill, but just to sleep for that long would be an amazing thing that I haven’t experienced in a very long time. I would also like to win the Lottery, just saying in case any one up there is listening.. 😉

As I am writing this two of the dozen or so people who spend most of their time sat in the park opposite where I live drinking are arguing so loudly that I can hear all they are saying from 6 floors up in my bedroom with the window closed. I really do despair of some people, it’s their life and choice on how they decide to live it but what annoys me is that they seem determined for everyone else to be pulled into it without our permission. I have no interest that one of them owes the other 20p and they want it because they need it towards another can, and the other arguing back that they haven’t got it because they gave them 50p yesterday to make a phone call. And apparently didn’t get any change from that. If you are aware of how a broad Bristolian accent sounds then you can imagine how they are speaking but if not then, ” I aint gert gorrit mind, cuz you ad it orf me fur dat phon call yesteeerrday dint yer!” Is the gist of it, and slurred too which makes it sound even worse but as they are shouting I can make it out. I thank my parents every day for teaching me to speak well, though they themselves are very Bristolian speaking. Not that I am ashamed to be Bristolian, far from it. But some deliberetely put on the accent for reasons I can never understand.

I am going to put my ear plugs in and browse the property site to take a look at what kind of accomodation they have this week. Although I can’t start bidding yet it is good to look and get an idea of how it all works. It also gives me something to focus on to block out the lovely citizens in the park and the symptoms currently trying to override me with their attention. I keep telling them that it isn’t going to happen, but then realise I am literally talking out loud to my body and promptly stop it. I don’t need madness on top of everything else!

 

 

 

 

 

Saturday thoughts and wonderings

I spent a lovely evening at my partners new place and the travel to get there went much more smoothly than I had feared. The taxi driver was great and even got my bags out of the boot and placed them directly to the side of me so I could access them easily. I have a high respect for taxi drivers, yes you can get some really bad ones but I have used taxies for years and there are more good than bad ones. They work very long hours and put up with rowdy, rude and aggressive passengers so I always cut them a bit of slack and do talk to them during the journey which makes it much more of a pleasant journey. Anyway, my partners place is beautiful, so much bigger than I had imagined and absolutely perfect in every way. It is big enough to wheel around but not so big to make it overbearing. It’s so bright and spacious and has a really welcoming air. It is just brilliant and somewhere I am very happy to spend time in the future when I am able to.

It’s half term at the moment, something that doesn’t affect me at all. For years I was on the ball with half term, knowing when it was months before the date and planning activities for my son and I to do. Even when my son left sixth form it sill affected me in the way that I knew shopping areas, my area and anyplace I went to would be packed with children and mothers looking harassed. Now days it doesn’t effect me at all, hardly leaving the house every few months means I don’t have to cope with the swarming shops of children. It really amuses me when people say, oh you don’t know what it’s like, how stressful it is.. Well actually yes I do, my son wasn’t born 19 thankfully I may add because that birth would of certainly been horrendous! I know exactly what it is like, I have just done all the half terms, holidays, in service days and it is a thing of the past. I cannot have any more children due to Endometriosis but I have the up most respect for anyone bringing up children when they have chronic conditions, I can only imagine how hard it must be both physically and emotionally. I suffer guilt about not being able to spend time with my now grown up son, I would be in pieces if he had been younger.

Motherhood is a strange thing. When they are younger it seems as they they will never grow into adults, working and leading their own lives. There would always be time for cartoons, park days, building things out of boxes and pretending to live in what ever building it became. I couldn’t imagine my son being grown up, it happened and so quickly that I don’t remember the exact point when it did. It feels as though one minute he was in the park playing football and needing me to pick him up to reach the monkey bars, and the next he has left education is much taller than me at 6ft and has a girlfriend, job and making plans to move out in the next year. But the memories always remain and of course there are new memories to make, just ones that now include him being an adult yet they are just as special as the childhood ones. I now get to be proud of the person he has become, know he is very unique yet strangely mirrors me in both attitude, personality and face/body expressions. I still have hopes of a happy future for him, to be happy is the only aspiration I have for him and will support him in any decisions he makes. Half term may be a thing of the past for me, but motherhood isn’t. Motherhood lasts forever no matter how old your child gets, and I for one and very happy for it to do so 🙂

 

 

 

 

 

And the week begins

I was up until 4am this morning watching wrestling.. yes it’s something I’ve watched since I was 7 years old and I really enjoy it. And seeing as I am up most of the night anyway it didn’t matter it finished at 4am. I am very tired and aching badly now, but I need to stay up for a few more hours as my Father is bringing my prescriptions round and some calamine lotion and lil bits for my son. It’s frustrating not being able to just go and get it myself, in previous years I would’ve just walked to my supermarket in the early hours and got everything we needed but alas, for now those days are gone.

I can only sleep for a few hours as I need to wake to take my meds, so today is going to be a blurry one and the things I need to do somehow placed in during the week instead. It’s certainly going to be an eventful week, but maybe that’s not a bad thing, it could challenge me to see how much I can achieve, if I pace carefully. Pacing is something I am still learning to do but it is much easier to accomplish these days. I think it is one of the few sensible peices of advice I had regarding my conditions, learning to stop and rest in between jobs so I don’t just go hammer and tongs at everything and collapse leading to weeks of relapse. It was hard at first, my head was saying go go go and my body was screaming no no no! I swear my brain tries to kill me sometimes.. But again, years of doing everything at top speed had to be retrained to take it easier which in turn helped my body not to just crumble. To be fair, it is easier these days because I am quite a bit more unwell, going downstairs and putting the washing machine on wipes my body and head out these days. But before I became this unwell I learned to pace, and was surprised at how well it worked. Again, it was one of the best peices of advice but also one of very few things that worked. I would recomened it to anyone suffering from chronic condition/s, along with not being so hard on yourself over something you can’t help. I had a moment of sheer frustration yesterday when I went to pick my mug up of my bedside cabinet and dropped it spilling the hot contents everywhere. For that split second my instinct overruled my stopping to think, I had forgotten my hand was playing up and the results were just a complete mess of tea all over my cabinet, on the floor and the mug rolling around by the lamp. I then couldn’t pick the mug up with my hand to stop in touching my lamp so had to inch it away with my wrist and it was a joke, every inch I pushed it the mug banged against my wrist and I just got more tea over it as my arm was laid in it on the cabinet. Now, I will be honest and say the words coming out of my mouth were not exactly biblical… very far from biblical.. but I did get a sense of relief in frustration as I cursed the offending mug as childish as that might sound. I finally got it onto the floor, the mug not the tea as that was already there.. by pulling a towel below the cabinet with my toes and letting it land safetly onto it. I have learned to use any limbs that I can when another isn’t working which results in me looking like a monkey come contortionist but it works so that’s all that matters, caring about self image goes out the window with chronic conditions!

So I am still learning to stop and think before I do things as I wrote last week, the mug was a prime example. Maybe when I get better there will be a new career in the circus for me..