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Penny Mead
112 followers -
Wife,mother,grandmother,disabled,Dr of Psychology, happy personality, just me
Wife,mother,grandmother,disabled,Dr of Psychology, happy personality, just me

112 followers
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Penny's posts

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Progression? Bah humbug



It's that time again, time for me to ramble and for those of you who read my ramblings to raise your eyes heavenwards and tut loudly.
I have had a rough few weeks and as I always do I have drawn back into myself whilst my head tries to get some understanding of what's changed and what it means for me.
This is about my health again and the twists and turns it is taking me through as it progresses and first I fight it, then I deny it, then I (hopefully) understand it and lastly I attempt to accept it.
What does disability mean to you?
Someone who has problems with certain things? Mobility maybe
Blindness/deafness
Some sort of physical problems and the pain etc associated with that.
Rightly or wrongly I guess that is where I placed myself and my condition, the skin disease means I have problems with sore hands/feet/ears etc
The arthritis means my joints are stuck/swollen etc
And of course the pain caused by these things are what I considered to be my disability. It was this disability that forced me to stop working, stopped me from being able to drive and so on......
So I accepted that, accepted my limitations and continued on with my life as best I could.
So where does being ill fit in?
I don't mean a cold, the flu or any one of the numerous illnesses you can have and recover from in weeks or months, I mean a never ending worsening illness that is connected to your medical condition.
Consider this....you do too much one day and please bear in mind that 'doing too much' for me now was just doing normal things a few years back, anyway you do too much one day and then for the next few days you're ill, not a bit tired or weary but physically too ill to go out or even get out of bed.
Other symptoms like headaches (temporal arthritis)
Side effects from medications you need like nausea, dizziness, lethargy
Infections that follow one another through your body
Abscesses
Overheating so badly that I stand outside whilst hubby shivers in a sweater.
Hang on.....these aren't what I signed up for, these aren't disability
These are symptoms of an illness
But I don't want to be ill, I don't want to have a chronic medical condition that makes me ill.
(Ok that's the foot stamping over)
I went to talk to my GP as I was having some pretty rough side effects from new Meds she had wanted me to try and whilst she agreed some of it may well be down to the Meds she also asked what else I had been doing for the few days previous to feeling so rough.......
Well, I had been busy that week, stayed at father in laws for four days, went to hospital appointment on day five and then to see my parents.....so?
So Penny you are not accepting your 'chronic condition' is progressing and you are at times not going to feel well.
It IS a chronic condition/ disease and it does make me feel really rough at times but I had been finding every other possible excuse to explain it away rather than look at what was really happening to me, why?
Because I had a hard enough job coming to terms with being unable to do things due to being disabled without accepting that the disability is down to a chronic medical condition that also makes me feel so ill at times.
I can almost see those of you in the know shaking your heads, it's the chronic condition that caused the disability, they are one and the same thing and the progression is what I need to accept and deal with.
Ok, don't push me, I will get there in my own good time and in the meantime I shall curse and scream at what's happening to me so cover your ears my friends.
- Posted using BlogPress from my iPad


Another step to the side


It's 3.30am, what sort of time is this to be sitting here contemplating writing?
I am riding the emotional roller coaster again at the moment and just before I dip back down Into the dark recess I thought I would do what I usually find myself doing at these times and put pen to paper......ok, fingers to the iPad!
The week started well, Claire (daughter) took me and Molly (puppy) to Hatfield forest with my grandson Morgan for lunch. My family have now got the idea that I can't walk very far at all but his wasn't going to be a problem as she was going to sit me under a tree in the shade while she and Morgan and Molly enjoyed walking along the river and round the lake. We will gloss over the fact that said seat under tree was a wee bit further than she remembered or that I very stupidly fell over on my way back to the car, all in all the trip out was a success.
Monday was also my grandaughters birthday and we had offered to take her and her baby brother ( and their mum of course) out for a birthday meal that evening so Monday proved to be a full on busy and enjoyable day.
Tuesday is always town with mum day, it's a struggle but those of you who know me will know I make every effort to do this each week as it is special time spent with my mum.
Wednesday I was in trouble, I hurt, I could hardly move and staying awake seemed to be beyond me for most of the day.
So ok we knew there would be payback for enjoying the beginning of the week, I expect it now and after my unfortunate fall On Monday I knew I was going to be in pain and have trouble moving.
I accept all this, have been here before and know that with rest and a few sensible days I will return to the normal levels of pain and restriction so what's this all about?
Well it seems that I don't only suffer physically I also suffer emotionally as my mood drops drastically and I made the mistake of asking myself why, trying to analyse yourself is never a good idea believe me!
Continued after a few hours sleep........
It seems that physical tiredness and extreme pain breaks through some of the defences surrounding my emotions and gives me a path to them that if I had any sense I wouldn't take....
I looked in the mirror and didn't like the fat middle aged disabled woman that stared back at me, I raised my arm in a wave hoping against hope that she wouldn't respond but of course she did, this IS me now!
Slowly but surely this condition/illness/disability is taking me away from who I thought I was and replacing me with .......?
Firstly the jewellery had to go because fingers swelled and skin reacted to anything but the purest gold...
Then choice of clothing became very limited due to needing help dressing and not being able to do buttons or zips etc, pull on trousers and baggy tops are now the norm.....
More recently I have had my hair cut short to help with the over heating problem and also as hubby has to wash my hair for me, again ease of use......
I think the problem is none of these has been my choice just as stopping work, stopping driving etc was also not a choice I made, these things have happened to me, out of my control.....and there's the rub isn't it? Control, we all like to believe we are in control of our own destiny, that we can make choices on which paths we choose to follow through life.
Acceptance is a word I hear often and use often myself, you have to reach a place of acceptance of who you now are, who you become each time things change, I understand this believe me I do but there are no signposts to acceptance and I have no sense of direction as my husband and kids will tell you.
And anyway I can't arrive at acceptance looking like this, I need to smarten myself up,
Hhhmmmmm
bright clothes maybe to brighten my mood?
I do actually like my hair short
I really can't do much about my weight but maybe I can try eating a bit healthier than I do
It is possible that this is the road to acceptance I am on and I just need to side step these barriers when I come to them.
When I see the woman in the mirror next time I will attempt a smile after all she is on this road too.
- Posted using BlogPress from my iPad


A little light hearted musing....

I am not at all political as you will see from the following, but I was thinking what would I do if I won the lottery?
This is my dream world....
I would love to win sufficient to be able to fund my own political party, it would be a party of the people for the people and here is how it would work.....

Firstly all MPs would have a liveable wage, sufficient to incorporate their housing costs, meals, journeys, and they're working week. There would be no expenses claims, no extras, therefore no scams and no extra charges to the taxpayer.

They would work a proper working week and therefore would be expected to be present at most sittings of Parliament.
They would be employed by the people and chosen from people with the appropriate background and experience in the department in which they would be working.
This would be the case with every single person working within the department, although there would be different levels within the department they would all have an interest, experience, and knowledge of the subject the department covered.
and just as in any business if the employee did not meet the standards required they would be dismissed.

Head of department would be those that had reached the most knowledge and experience in that particular field, not as is the case now those with the most money or influence.

This I believe would give everybody equal opportunity to have a say in the direction our country took, doctors could work within the health department, teachers in the education department, disabled people and those concerned with employment etc in the welfare department etc etc
The ministers in charge of each of these departments would therefore be those with the most knowledge, the most experience, the best people to be leading these departments.

And the Prime Minister?
He/she would obviously have to be a people person, the glue to hold the departments together.
A listener, A thinker, strong enough to make difficult decisions but human enough to make those decisions with empathy.
Someone whose overall consideration would be the people in this country, each and every person in this country, you and you and yes even you!......

Before you start jumping all over me and pointing out the flaws in my political party please remember I have already stated my lack of political knowledge, this is a dream and I am allowed to dream aren't I?


- Posted using BlogPress from my iPad

New blog post
Do you moan?



The title to this blog is probably a little misleading, I have been pondering how we all handle tough times differently and is there a right or wrong way in which to do so?
This came about after a telephone conversation with a good friend earlier in which she stated she knew when I said I was having a bad day that it must be a very bad day as I never moan generally about how I feel.
This is true as I tend to go very quiet when things get too much for me, I withdraw into my own little world and no one gets invited in to that place until I feel ready to handle life again.
Why? Why do I feel it necessary to shut myself off from family and friends at these times?
There are people who are very open and upfront about how they are feeling be it either in themselves or in life at any given time.
They have no problem telling others they are feeling rough, tired, upset, in pain, depressed etc etc and in some ways I envy them that openness, but does the fact that they are able to vocalise their feelings quite easily mean they get more understanding, care, support?
Or is the opposite true and if you see/ hear the same person saying these things often enough does it diminish the effect on the listener whereby eventually it is met with a knowing nod and a shrug of the shoulders?
Is perhaps the ability to be honest about how you feel related to how valid you believe your problem, illness is to others?
Are people more prepared to say they are feeling awful if for instance they have a recognised condition or something is happening in their lives that most people would have empathy or sympathy for?
Do we see it as strength of character to struggle on without a whimper or is the opposite true, do we frustrate our friends and family when we refuse to 'let on' when times are tough for us?
I can obviously only speak for myself here....
1) my gorgeous puppy Molly came Into season 3 weeks ago for the first time, the vet said he preferred her to have one season before spaying her but he didn't warn me about how emotional I would find it, yes I know she is just a dog, she wasn't dying etc and it was just a matter of keeping her virtue intact for a few weeks but it really got to me.
She wasn't her usual happy self, and every time she looked a bit down my heart turned over, yes I am a softie and when I was told I was too empathic even I didn't realise that empathy would extend to my dog but it did.
2) my condition is worsening, I pretend it's not and refuse to give in to the beckoning wheelchair or calling out for help when my hands are so painful they can't lift a full cup but I am aware of its progress and of what that means for me. I am battling with myself constantly against the pain etc.
3) it got so very hot and humid here this past week and with a body that has a broken thermostat it has been hell, I don't mean the waving the hand Infront of face overheating you have been suffering, I mean the having to stand outside in my daughters garden after 10 minutes indoors being sociable as I can't see for the sweat running into my eyes, I mean the waking up every hour and having to change nightclothes etc, I mean the energy sapping headache inducing type of heat that I just can not cope with any longer.
Ok so how many of you knew I was going through all this?
Did my family know?
Did my close friends know just how bad it was?
Some astute friends/family had some idea but I didn't shout it from the rooftops, I didn't broadcast it on twitter or fb apart from the odd few comments here and there.
And why not?
Well read what I have just said again about the past few weeks, doesn't it sound self pitying to you?
Maybe if you had known for the first few days you would have offered support and sympathy and then what? By day four or five wouldn't you have been saying/thinking ' there's nothing I can do' or ' blimey Penny this isn't like you to moan so much'
Or would you? Maybe that is why those of us who keep quiet do so, because we are unsure of what the reaction would be. This is learned behaviour isn't it? Don't complain etc as its not the done thing.
And what do we do if people are really kind and supportive etc?
We shrug it off, get embarrassed and play it down don't we?
How many times do you answer 'I'm fine thanks' when asked how you are?
So is sickness a weakness not to be spoken about?
Are you a strong person because you bear it all in silence?
Are you weak to want and accept help and support when offered?
Is it weakness or strength to speak out openly about how you truly are?
And who is better off, those who can speak out or those who can't?
I don't have the answers.......just the questions.


- Posted using BlogPress from my iPad


Carers on social networks

When is enough really enough?
I am a huge fan of social networks such as twitter and Facebook but are they really harmless places to socialise?
Oh I know about the dangers of stalkers, pedophiles etc and the danger they represent but what about to 'ordinary' everyday users?
I have come to realise that these social sites are used for many different reasons by many different personalities, maybe that is what keeps it exciting for us.
I have however been made to look more closely at what can happen to the 'carers' of twitter recently.
Carers are the people who often have problems/issues of their own, be that illness, disability, emotional issues etc. this doesn't surprise me as I have always believed those most willing and able to support others are often those who have experienced things in their own lives, maybe that is why they reach out to others or why others reach out to them.
This is a good thing and thankfully people do still care enough about their fellow human beings to interact in this way. But it carries with it responsibility not only to the person you are helping but first and foremost to yourself.
I have seen several of my friends get overwhelmed by the demands placed on them recently.
If you dread logging onto a social network for fear of what may be asked of you, or logging on to check on your 'friends' takes precedence over other maybe more important things then you need to take a step back and look at what you are doing and what you could do differently.
Your own emotional and physical health must always be your priority or you will find yourself rushing headlong Into burnout.
Burnout is a very real problem and should be taken very seriously.
Maybe it is my background in Psychology That has made me so aware of how awful it can be and the warning signs we should be looking out for.
I reached a stage in my working life where I used to have to have stern words with myself before a client came to get my head in the right place to work with that client.
There were times when a feeling of real dread would come over me at the thought of the days counselling ahead. Admittedly I had health problems to contend with as well but I pushed on for far longer than I should have done.
I have to admit I wonder if we allow ourselves to get so involved in others issues or causes as it enables us to put our own issues on the back burner for a while,
Whilst your head and your heart is feeling for and at times fighting for other people or other causes you have no time to look at yourself and what may be going on in your own world.
It's a clever distraction but don't be fooled, whatever it is you are covering up or running from will need facing one day and you will have depleted energy with which to face it if all of your energy has gone to others.
Don't stop supporting or caring about your fellow human beings as it is what makes you special and undoubtably it is appreciated but do please keep your own health and well being uppermost in your mind, taking a step back now and then is preferable to having to cope with burnout.
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What?

Well I just don't know what to say,
On the one hand we have the Olympics and all the pomp and ceremony this country does so well and on the other hand we have this government knifing it's people in the back again and again.
Talk about being on a roller coaster,
Yesterday we got our first gold medal and they kept coming too,
Yesterday a very good friend of mine got turned down for DLA at appeal, this lovely lady is undoubtably disabled, genuine and although she has been this way for 16 years she has never claimed anything, instead her family have struggled on with just one income, her husbands.
She is entitled to some help from the state but this cold new way of looking at claimants, any claimants has left her feeling humiliated, broken and not believed.
Today the gold medals continued and pride swelled for our country,
Today the DWP announced that ATOS had been paid £400million to do the assessments for DLA to PIP that are starting in 2013 .
Hang on that can't be right,
Don't ATOS and DWP get one in every six assessments of ESA overturned at appeal? Yes that's one in six wrong......
Are those appeals not costing the tax payer an extra £50million?
Did any of you watch the dispatches programme on Monday? Or Panorama also on Monday?
We're you shocked by the ATOS workers? Their rules and the way they dealt with what they knew was a cruel and unjust system?
We're you sickened by the deaths that have occurred due to their decisions?
Do you still believe that Ian Duncan Smith, Chris Grayling et al are doing this for our own good?
I'm afraid I left cloud cuckoo land as soon as it became apparent that the whole thing was and is motivated by greed.
Would you seriously give another large contract to this company? Doing the same or very similar as they have been doing BADLY for the past three years?
Well yes you would if your sole intention was to get as many sick/disabled people off benefits in any way possible.
If you were driven by money and not concern for your fellow human beings, then yes ATOS are the perfect company to award this contract to.
God help us all and if like me you no longer are sure there is a god then pray to whoever you can because my friends we need it.......
- Posted using BlogPress from my iPad



Pain
This was not the blog I set out to write today, I was going to write about my two days away and maybe I still will but as is often the way with me my blog subjects seem to choose themselves.
Pain.....is there such a thing as a pain threshold?
A very dear friend of mine has found herself with a painful injury this past week and the procedure to try to help was just too painful for her to bear, she asked me how I cope with being in pain 24/7 and it got me thinking.
If like me you have an on going painful condition do you reach a stage where your pain threshold alters?
I think you must as although I am obviously aware of the constant pain I am able to bear it. If it gets worse or as my medication becomes due I become more aware of it but I actually stopped to think about this last night and allowed myself to really feel the pain that is always present and I believe you learn to block it to a certain extent or you wouldn't carry on.
Or I wonder does a constant pain become the norm to you after time?
My mum suffers with tinnitus and I will never forget when she first got it she was in such a state she lost lots of weight, was really suffering and we were so worried about her. She didn't receive any treatment as there isn't a lot they can do but she did eventually hit a time when something changed for her, did she adapt to it? Accept it was always going to be there? Again I really don't know but she got better in herself and hardly mentions it now although I know she still has it the same or even worse.
Is that what we do?
Putting my thinking (and honesty) cap on last night I asked myself the questions doctors ask "on a scale of 1 to 10 where is your pain?"
And every day normally I would rate mine at 6, a constant 6 that never goes, It rises at times, especially when I don't behave and push myself too much but even resting and doing as I am told (rare for me) it is still a constant 6 so how do I cope?
Why am I not a screaming maniac all the time?
I am convinced your brain/mind takes over, gives you a talking to and makes you realise life just wouldn't be worth living if you were aware of that degree of pain all the time.
So what if a person like me gets a different type of pain?
Has my pain threshold altered so any pain is dealt with the same way?
Again I can't say for sure but during these two days away I have got horribly sun burnt and believe me it looks very sore, I am suffering but would/should I be noticing it more?
Would a person who doesn't live with pain daily notice the sunburn, a headache, toothache etc more than me?
I think the answer is yes, I think we do all have a pain threshold and that can change as needs must, it is a form of protection almost against feeling pain to such an extent we are unable to function.
Yet again the mind and the body are so interlinked one steps in to assist the other when desperately needed.
What a truly fascinating species we are.
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Welcome to my journey

Being tired is not a crime, being disabled is not a crime so why do I always feel I have to push myself to my absolute limit before I allow myself to stop?
Let me explain, if I can as I am not even sure I understand my actions at times......
Two weeks ago we took my parents to my cousins for 4 days in the New forest, it was lovely, great fun and not overly stressful for me as my cousin is aware of my limitations and is great to be with. Still I suppose I did more/different things there than I normally would at home and the journey there and back is about my limit of being able to sit in the car nowadays so understandably I was tired when we got back home, did I sit and allow myself to recover?
Last Monday we had workmen here to repair the damage caused by the leak from the flat above at Christmas, this meant the kitchen cupboards had to be cleared out for them as well as the wet room, did I leave it to hubby to do?
They were here all week, after they left every day there was cleaning up to be done and finally putting things back in cupboards etc, did I watch hubby do it?
Trevor had been asked to give his niece a hand this week with her garden, he loves gardening and since we have been in this flat for the past 19 years we have had no garden of our own so I know he enjoys helping the family with theirs.
Now I could have said ' I am really not feeling well enough to be left for a few hours today' or that I couldn't manage the puppy on my own especially if she needed to go outside but did I?
He went for few hours in the morning on two days this week, came back for lunch time and then went back For a few more hours in the afternoon.
I could have called him the first time Molly wanted to go out, or the second time when my body was screaming at me 'you won't make it'
But did I?
The answer is no, not once did I listen to my body as it begged me to ease up, warned me it couldn't take anymore, screamed at me to stop now.....not once did I rest when my body hurt so much I had tears in my eyes as I pushed on......not once did I call Trevor or the girls and say " I need help please"
Why not?
Sheer stubbornness? Bloody minded ness? Pride?
All of those things I suspect but more than that, a feeling that I can't give in to this condition, that it makes me less than I should be to admit I can't do things anymore, that it demeans me and what I stand for in some way.
Are we pre programmed with the sense of weakness being wrong, that strength of character is so important or that sick/ill/disabled people are somehow less important than strong healthy people?
Or is it the way society today is being encouraged to view us as second class citizens, shirkers, scroungers that is having an effect and making me so determined to fight against common sense and my bodies limitations?
Why am I afraid to accept things as they are?
Why do I refuse to listen to what my body tells me?
Why do I continue to make my own life so hard?
I don't have all the answers but I will keep looking for them, welcome to my journey.
- Posted using BlogPress from my iPad


Post has attachment
Sharing a kiss
Photo

Saturday's thoughts.

It's Saturday and I'm thinking. I'm only thinking in small blocks in between the telephone calls from Trevor who has gone shopping in Tesco.
This is a weekly occurrence as are the phone calls
Trevor....Cathedral city cheese is only the extra strong on special this week
Me.....we don't need cheese
Trevor......or the light option, we don't like that do we?
Me.....we have enough cheese, maybe next week they will have an offer on a different one
Trevor.....I won't get cheese this week then.
Where was I? Oh yes thinking.
It's hard when you have a long term health condition to find a level that keeps you sane, some days you can do something that other days you can't do. Try explaining that to people who think that because you were capable of going out to dinner last week there is no reason why you shouldn't go out to dinner this week.
Trevor.....do we want crisps this week?
Me.....we haven't got any
Trevor......I know but do we want any
Me......you decide
I'm very lucky in that I have a good close family and friends but even then they do not always understand how frustrating it can be not to be able to function fully, it's hard to have to limit what I do with my grandchildren and I often wonder what they must think of me when I can't always play with them, chase them around etc, I wrote them this poem a few months back....
Trevor.....cakes this week?
Me.....well we haven't got any
Trevor......the lemon or the strawberry ones?
Me.....yes
Trevor.....which?
Me.....yes
Right, the poem...
I can't hold you with these hands
But I hold you in my heart,
I can't run with you through the snow
But we run together through my dreams,
I can't lift you up high above me
But I can still lift your spirits,
I can't join in your rowdy games
But I can recite rowdy rhymes,
I can't stay up late with you
But I can lie down beside you,
I can't make you sandcastles
But I can make you laugh,
I can't walk you to school
But I can be waiting when you get home,
Whatever you can not have with me
You will always have my love.
Trevor.....I'm getting cereal this week
Me....good idea, I'll have special K
Trevor......they haven't got special K bliss
Me....get another one then
Trevor....red berries?
Me.....fine
Trevor (sharp intake of breath) it's £4
Me.....leave it then
I often get asked how I keep my sense of humour, that's easy to answer, who would I be without it? It helps to be able to laugh at life sometimes, to snigger at your body when it refuses to hold a cup or to giggle at people's faces when they look at me hanging onto my elderly mother as we shuffle through the town.
In all seriousness I read other peoples tweets/blogs etc and see the dreadful things they are putting up with and I consider myself lucky.
Trevor......do we need cat food?
Me....not this week
Trevor.....they are still on special, oh not his one, oh yes they are his but they haven't got any, ah yes they have.....but I won't get any this week.
Where was I again?
Ah yes, it is true that there is always someone worse off than you are and whilst that is not always a comfort when the pain is horrendous or you are reminded again by your body that it's falling apart it is worth remembering and when I see how some people cope with their illness/disability I am truly humbled.
And the greatest thing of all? It's to know you are loved, having family who care about you, friends who check to make sure you are ok, grandchildren who smile when they see you and a cat and a dog that adore you, these are the things that keep me smiling, keep me fighting and keep me living.
And you are so right, there is no purpose to this blog at all......good innit?
Trevor's home, shopping to put away......
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