Author: Ginny Therese

Blank and falling

I was sent home from work today because I got to the point I just could not stand up anymore with the pain and altered sensation in my legs. I had to get a taxi home. Walking was so painful and my mind felt totally out of it and like I was ready to fall asleep or faint. I was trying to take steps but it literally was not working and I felt I was coming to pieces.

I’m scared. Things have crashed so fast. Though it isn’t fast really, as I’ve known for months that physically things were getting worse. But it feels fast, how quick I’ve gone over the edge to not coping.

The mental effects are as frightening as the physical loss of strength and all-encompassing exhaustion. I feel the room is swaying. On the verge of a panic attack for ages. Other times my mind feels frozen. My words get mixed up, the words that come out aren’t what I’m thinking or wanting to say, some stupidly substituted word or mixed up syllables comes out. People talking seem far away. I hear sounds but I cannot piece the words they are saying together. It’s scary, overwhelming noise. Thinking and speaking myself feels like struggling through thick water. The worse the tiredness and pain is, the worse it gets.

Then the worse the anxiety, hallucinations, obsessional thoughts and panic about what is in me and what everyone thinks…

I’m scared how far I’ve crashed so quickly. I’m hoping I’ll be able to find the way forward soon. Maybe with rest in a couple of days my head will feel different. I’m scared I’m going to get all shut away in my head again and lose the benefits people tell me therapy has brought me and that I was starting to see in what I can express or hold in mind.

The state of my mind right now makes me feel more vulnerable than the physical effects.

It’s weird the interaction with the pain and the cognitive struggle to keep a grip and the disconnection from reality, either shut off from emotions, drowning, or feeling too overwhelmed by being scared.

There’s so much I want to ask but can’t articulate.

Everything is slipping and I’m trying to hold on to the fact that even though I don’t have control of my mind right now or control over what’s happening to my body physically, I have a loving God, who will not leave me, whose love is perfect when we are weak; I have family members who care and some good friends who are still there now things are hard.

Ginny xxx

Crashing

This is a hard post to write.

I have not been coping physically with my job for a long time. I have really tried to ignore this. Since I started it made my pain levels worse and ever since they have kept increasing. I kept hoping it would at least stop getting worse and maybe that I’d get better at coping with it. I wanted to be able to do it. Be some kind of normal. My job sometimes helps me mentally, engaging in something creative and focusing on helping customers and giving the best service I can. It takes my focus outward which I’ve long believed is really important in staying well. The tactile aspects of my work, handling the different fabrics and trying to create attractive displays, can in themselves be grounding and soothing. Additionally, it’s an area where I can try`to do some good and not feel useless. (I know that’s something I need to work on, how connected my sense of worth is with others’ outward perception of me, but I can’t deny it helps for the time being.)

Now I’ve come to the point of crashing completely. In the last 3 months in particular my pain and physical weakness has increased faster. Since around the time of my operation I guess marked a real down-turn physically and it was to be expected really that  my fibromyalgia symptoms will be worse for a while afterwards. Everything is worse really, my back problems (I had a slipped disc years ago), arthritis…

I know I haven’t really talked about it so maybe this sounds weird. Whenever I talk about my physical health I worry it all sounds stupid, nobody would believe me, I’m a fake and I should just get on with it and everything’s my fault. (There’s a lot I have to work on there too, I know.)

I feel like I’ve crashed suddenly. Gradually it has got harder and harder to – move, to put it bluntly…  Getting harder to get through the day….harder to be able to get home, having to sit and rest, and crumpling as soon as I get in, lying down most of the evening… Today I have had to spend most of the day lying down. Pain and shakiness in my legs makes any standing and walking really hard. My legs are cramping and jerking out of the blue. I can’t feel in my right foot normally and at the same time the pain is really bad through my lower back and hips, worst on the right… I’ve had all this before although not as bad, but I am very scared right now. I feel scared and shaky and lost and so tired. I slept a lot today too. My support worker came this morning and I was so tired I was struggling to literally get words out.

So I find myself admitting again that I am probably going to have to leave this job. The physical deterioration from trying to meet its demands is too much. I have tried to look into reducing my hours but it does not look as though this will be possible. I;d have to massively reduce them in any case. My manager has been kind and understanding in her approach but has to follow the sickness absence procedures set down by the company. Since I have been off sick 4 times within a 6 month period, this is flagged as a problem. I can well understand that it is not fair to colleagues to be off too frequently and I know myself that I am struggling more and more with daily tasks, which is increasing my anxiety and in turn my psychotic thoughts and my fears about what colleagues are saying and thinking about me and making it harder to cope with the hallucinations and all the mental struggles of every day.

Outside of work the effect is great too. Not only are the pain and mobility problems an issue, but I have no energy or coping resources left to manage day to day tasks like keeping my house clean, keeping in touch with people, doing positive things to bring a balance to life outside work, or perhaps most importantly right now, giving the energy to therapy and recovery that I need to. The months I have left with the PD service are precious and working on making use of my individual and group sessions is demanding. I want to be mentally “present” for it, not shut off protecting myself because I’m desperately trying to cope with pain and utter exhaustion.

I’m going to be referred to Occupational Health so I await to see what they will suggest.

ergonomic occ health

I also have to follow my doctors’ and my support worker’s advice. I believe they would all prefer me to reduce my hours. My support worker definitely thinks so.

The one thing that ironically, in a twisted way makes this situation possibly not quite so bad, is that I may actually not be worse off financially working fewer hours or not working at all. I want to talk about this more in a separate post shortly. It’s a bizarre situation that doesn’t sit well with me. At the moment I am struggling in pain and making myself physically worse every day, working part-time, earning just above the minimum hourly wage.  I receive less than £10 per week help towards my rent, I am not entitled to any help at all with things like council tax*, and although I was initially assessed as eligible for a small amount of tax credits, this decision has now been changed and I have been told that I am not entitled to any.  Now, I strongly believe that it is morally right to work as much as I can and not to expect to receive handouts when I could be earning myself. However, what I cannot get away from is that on my current earnings whilst I am working as many hours as I can (well, I have to admit now, more than I can) I cannot live. I do not have enough to cover basic bills and simple living costs and I would not be getting by if it were not for regular help from my family and even occasionally my very good friend who has lent me money for grocery shopping when money has been tightest.

Not only can this situation not go on – I am over 30 now and I simply cannot go on needing financial help from my dad; I have to support myself – but the cost of this job physically is just too much to go through to still not be able to live. It is painfully ironic that because if I were not working or were working fewer hours, for example for a few months or so whilst I complete my therapy, my financial situation would actually be more stable because of the greater help I would get towards rent and living costs. That makes me really really uncomfortable and it isn’t right. Yet I have to be able to live.

It isn’t the main factor that has led me to this point. If I were coping physically I would keep going and if I could I would see if I can increase my hours. But I’m forced to accept that just isn’t so and physically things are not good right now.

I feel really worn out and vulnerable right now. The last time I was so low physically, about 7 years ago, I didn’t feel so afraid or sad. I wonder why that change has come. Perhaps I feel more responsible now. Perhaps I am sadder about potentially leaving my job because there are aspects of it that I genuinely like this time. Perhaps I feel more of a failure that this has happened again.

I need to focus on the good things that could come out of it if I do have to leave. My health problems are not life threatening or anything that serious and so many people are going through much worse, much more medically severe, perhaps without friends to help them and understanding doctors. In moments I can see that there can be ways that in the next few months I can try to turn things around.

I don’t want anyone to feel bad for me. Tonight I just needed to get all this out and admit that I’m scared.

Thank you for listening. I can’t imagine where I would be right now without this blog and the support of you lovely people who read and care and comment. There’s so much more I should say on that. I hope you know how much you mean to me. Hugs xxx

Ginny xxx

(*apart from the 25% single person occupancy discount. For non-UK readers, council tax is a roughly monthly fee payable towards local government spending like policing and other emergency services, refuse collection, some elements of care for vulnerable people, etc. Most working adults pay council tax. The amount payable depends on the value of the property you live in.)

Image not mine, sourced on the ever useful Google – I am afraid I do not know the artist (it says in the top left I believe but I was not able to expand it to read it.

Cards and crafts

20160630_085426-1

I’ve been trying to devote a bit of time each week to something creative. I find it’s encouraging to be able to make something pretty even when you’re not feeling good. I’ve been making some greetings cards again. A colleague is fundraising for the charity Tommy’s , which does amazing work and research to help those who have suffered with a miscarriage or stillbirth, and I’m going to sell the cards for donations to this cause.

20160630_085622

Not very good images I’m afraid;  I should try to get some better snaps.

20160630_085826

I took the pictures used in the photographic cards. As I think I’ve posted about before, taking photos is another activity I enjoy and it helps me focus on all the good things in the here and now. So it’s nice to be able to use the images this way.

Ginny xxx

In that rich earth a richer dust concealed

In that rich earth a richer dust concealed

The Soldier

If I should die, think only this of me:
That there’s some corner of a foreign field
That is for ever England. There shall be
In that rich earth a richer dust concealed;
A dust whom England bore, shaped, made aware,
Gave, once, her flowers to love, her ways to roam,
A body of England’s, breathing English air,
Washed by the rivers, blest by suns of home.

And think, this heart, all evil shed away,
A pulse in the eternal mind, no less
Gives somewhere back the thoughts by England given;
Her sights and sounds; dreams happy as her day;
And laughter, learnt of friends; and gentleness,
In hearts at peace, under an English heaven.

– Rupert Brooke

Today is the 100th anniversary of the first day of the Battle of the Somme on 1 July 1916; the largest battle of the First World War and the greatest loss of life in the history of the British Army.

It is hard to find adequate words for this day as we remember sacrifice on that scale. I wonder if we think enough on the way and the reasons people gave their lives.

When I was at school we made a trip to some of the Somme battlefields and memorials, including the Thiepval memorial (pictured above*) where the commemoration service was held today. I am very thankful that we went there. We walked some of the tracks over the fields; we made our way through ruins of some of the dug-outs and trenches; we counted names on the huge memorials; we passed through lines of stark white crosses. I remember looking at the engraving of the name of one soldier not yet 16. We could not imagine the horror that was suffered and the lives given in those fields but it did give a lasting impression, just a little more, of the scale of the sacrifice and what we remember.

At school we also studied the poem above. Most of the analyses of it focus on Brooke’s patriotism. Yes, of course that love of and gratitude for our homeland is strong and passionate. But the way I read it, it is not an isolating, insular love of our country. It is a generous love. As England blessed The Soldier, so the Soldier is giving himself for a better world, and looking forward to the peace of the pure peace of heaven; he “gives somewhere back” the good that he has, in his life and in his death.

The sacrifices of these soldiers seem all the more poignant to me this year, given the current uncertainty of the future for the peaceful Europe we fought for, sparked by our exit last week. They also remind us that we have come through far worse times than now, and that we have so very much to be thankful for.

– We will remember Them. –

Ginny xxx

*With thanks to somme2016.org for the image

PS – for some reason my blog has decided not to let me insert hyperlinks in my post above tonight 😦 To read more about the 100th anniversary commemorations, you can visit: http://www.somme-battlefields.com/centenary-somme-centenary-14-18/commemorations-2016-countdown-has-begun 

“In a most delightful way…”

“In a most delightful way…”

“Just a spoonful of sugar helps the medicine go down, in a most delightful way!”
(Mary Poppins)

Channel 4 airs a programme called “Gogglesprogs” which is an off-shoot of “Gogglebox”. Children are filmed watching and reacting to a selection of television programmes from the previous week.

Tonight the children were watching “Mary Poppins”. The nannies started blowing away from the Banks’ front door as Mary Poppins arrived. “That’s so unrealistic,” complained one child. Later, during the song “A spoonful of sugar”, one young boy mused “Do you ever think [Julie Andrews] was on drugs when she made this?!” and a girl worried, “A spoonful of sugar? That’s a LOT of sugar!” (Oh, do we have to have a modern health conscious version these days? Just a spoonful of low GI anti-oxidant kale juice with whatdoyoucallit berries…)

I laughed but also wondered whether we’ve lost the magic along the way somewhere!

Nevertheless, I was pleased to see that most of the children quickly had the measure of “Made in Chelsea” and how staged and false the interactions are. It worries me that they have such young children watch this kind of programme (the youngest must only be 7 or so), however saying that, they seemed eminently sensible in their judgements!

Ginny xxx 🙂

Finally online!

Finally online!

It feels as though it has been a long wait but finally I have broadband at home. Yay! Now gradually I will be able to get caught up on replies owing here. I’m looking forward to being much more able to visit your blogs too. Thank you for your patience with me during the past weeks of problems with connection and posting.
I’m not too well physically at the moment so I am sorry that it may still take me some time to get caught up.
Hoping you have had a good day.
Ginny xxx

(Br)exit this way…

(Br)exit this way…

[Note: I began writing this Friday 24th June]

Today is a strange day in the UK.

Yesterday the people voted in the referendum on Britain’s future in the European Union and early this morning we heard the results – and we have voted to Leave. Just after 8.00am our Prime Minister announced his decision to resign (you can listen to his speech here); by the Conservative Party Conference in October he will have handed over to a new Prime Minister who will begin to negotiate our exit from the EU. There has also been a vote of no confidence by MPs against the leader of the Labour Party.

I don’t normally write about political matters and I somewhat consciously choose to keep them out of this blog. It isn’t what I want the focus to be. In any case I never feel sufficiently well educated, informed and aware to make a view and comment (I know that’s not a good thing and I’m trying to change it). There was certainly no shortage of conflicting messages in the run up to the vote with each side foretelling disastrous consequences of “leave” / “remain” respectively. Another aspect of politics I find very difficult to get my head round is how the explanation of how our lives will be affected in practice by decisions so quickly gets deeply buried beneath interpersonal and inter-party conflict and attacks. If I listen to a political debate I usually get a clear picture of what each person does not want and who they hate but not a clear picture of what they want to make happen and how it will happen in terms of you or I. The fact I get lost when emotions run high (even when it’s other people’s emotions and I’m just observing) doesn’t help!

I can’t talk about the politics but I can say how it feels. Right now it feels very unstable with lots of unknowns.  I think we’ve made a decision that’s going to have an impact far longer lasting than the choice of a Prime Minister in a normal general election. We haven’t just chosen our leader for the next few years. We’ve made a choice that affects our and our children’s future relationship with the rest of the Union and quite possibly wider than this. It’s a step defining how we want to interact with the wider world and our changed position will no doubt influence how countries much wider than the EU want to relate to us. Already this morning [Saturday] the consequences of our decision are clearly affecting other European countries’ attitude to us, with France among others demanding the immediate departure of Mr Cameron, the choice of another Prime Minister within days (it’s very hard to see how that could be achieved democratically, is it not?) and the immediate activation of the Article 50. In fact in the short term, for all the Leave campaign emphasised the independence we’d get by exiting the EU, these demands seem to suggest we may still be under the influence of the much less open attitude member states will now have towards us.

I switched on the news straight away around 7.00am Friday when the final count had come in. First of all I was stunned. Perhaps that was naive, but I was. I didn’t think the vote would be so close and I thought that in the end we’d vote to remain in the Union. As soon as David Cameron stepped out to address the press, I felt he was going to resign. I was not particularly a supporter of Mr Cameron but I felt real sadness at his speech. Clearly so did he. 

A little later in the morning came a poignant demonstration of the impact the vote has had on people like you or me. A friend of mine is getting married next year and a substantial portion of the money she and her fiance had saved for the wedding and their planned house move was invested. This morning, this money was just gone, just like that, because of the instant effect the outcome of the vote has had on the stock markets. I’m not sure how much it’s possible she will get her money back now the pound is back on the up. As well as hurting for her in the huge blow she’s suffered, I was again stunned. Whilst I had long thought that leaving the EU would be negative economically, I didn’t have a picture of how quickly and how hard it could hit individuals. Was I very unaware? Maybe, but also, I don’t think I’m alone in that. I don’t think there was clear enough information on this kind of impact.

I know that instability and the reaction to the instability is inevitable when there’s a big change and that is not a reason in itself to steer away from a change. But this time I don’t see a clear path of what we are going towards. I won’t go on about the arguments for and against because they’ve been gone through at such length in so many sources already.

One thing that does worry me is that a petition has been raised by supporters of Remain [in the EU], demanding a constitutional change, which would mean that votes with less than a 60% majority and less than 75% turn out of voters were not valid and had to be repeated. This change would then be used to render Thursday’s  referendum result invalid and to call another referendum  (with the objective of an outcome favorable to Remain).

Now, in some ways I can see their point. It is sad that less than 75% turned out to vote on such an important matter. This may not have been because of indifference or even people feeling unable to choose how to vote – there may have been practical impediments, for instance, there were severe flooding and storms on Thursday afternoon which prevented a significant number of people racing the polling stations. This is most unfortunate. I don’t really know quite how it could be organised but I can see a case that we should have found a way to enable these citizens to cast their vote and have it counted. Still, I don’t know that this would have swung the vote the other way. The problems were not so severe as to account for anything near the 25% of British citizens who didn’t vote. Most of the flooding problems were around London, where locally Remain won the vote anyway.

I find the purpose and basis of what is being asked for in this petition to be very wrong.  It has been raised by persons who are not happy with the outcome of a democratic vote in the hope of getting the outcome they want. They are refusing to accept the fact that the majority of citizens voted Leave. I wanted us to Remain but I accept that the majority choice was Leave. We are proud of our democracy. We can’t ignore the outcome of a democratic process just because we don’t like it. Before the vote, it was not stipulated that there had to be a certain percentage majority for the results to be valid. There was plenty of time to consider and apply this if we had wanted to. Again, the petition is calling for it to be introduced after the event to invalidate the democratic results because Remain supporters don’t like it. Plus, introducing a new regulation after the event and then using it to invalidate the previous event seems bizarre and unfair. The law doesn’t work like that. If a new law is introduced, we don’t retrospectively arrest people who “broke” the law before it existed. This should be the same. The only place it would be right to declare the results of a democratic election invalid, in my view, would be if there was reason to think the voting process was not democratic – if people were manipulated, personally threatened or coerced. We risk taking a leap into the territory of trying to control how people vote and manipulating results.

Another rapidly emerging feeling I observe is young people and young voters (teens through early/mid twenties maybe) angry and frustrated towards what they perceive as the older generation who they consider have messed up the future for young people who will have time live with the consequences of our exit the longest. I do not agree and do not think this view is very well founded at all or the accusation fair, but it is powerful. Even in my small circle on social media and at work, this anger is taking hold and turning to hate and angry, accusatory comments. I do not doubt it will soon go beyond comments and real division will be caused. Together with the fact that views are polarised between England and Wales and Scotland and Northern Ireland, it seems we could be heading for a less-United Kingdom!

For me I think it’s clear we have made a lot of decisions based on fear – fear of uncontrolled immigration, fear of losing our identity and independence,  fear of the future when so many people struggle materially day to day. For me, the past week has ensured I’ll work harder to understand what is going on in the government of our country rather than avoiding it feeling too intimidated by the acrimony and extreme views and scare stories that surround it.

Ginny xxx