Tag: arthritis

Going away for a break

Going away for a break

Wow. This week has been really emotional, with so many really sad tragic things happening – the Grenfell Tower disaster, two terrorist attacks in London, another attempt in Paris, another major attack in Mosul – so much pain. I desperately want to be able to “do something”. Help. Bring some hope. Bring the merciful love of our Heavenly Father into this pain.

My partner and I have taken some action to do this and I’ll post more on that separately.

Meanwhile I’ve been feeling overwhelmed. I’ve had a couple of appointments with the pain clinic which have been very draining and in some ways upsetting. I’m sure I’m going to learn things that really help there and I have to try to keep going, keep trying, keep open to what they’re saying and offering even through the parts of it that hurt.

Today my partner and I are going away for a few days. We are staying in a besutiful hotel. We’re going to meet up with some of his family and my goddaughters’ family too. This is the first time in I don’t know how many years that I’ve been away on holiday. It’s not to a totally unknown area but I’m anxious. It’s a huge thing for me to go away and stay somewhere I don’t know and to stay a few days. I am excited too and know I really need a break. Most importantly I’m looking forward to some time to spend with my partner, talk and pray together, and share home calmly rather than constantly running around at the point of exhaustion and it seeming that time in which we can be there for each other and be thankful for each other sometimes comes last. I’m thankful for these coming days and pray for God’s blessing on our time together.

There’s a pool at the hotel and I have made up my mind that for the first time in about 7 years I’m going to get in the pool. I’m going to try to do some of the exercises my pain physiotherapist gave me and try to swim a little. It should be fun but also a great challenge to overcome as I haven’t been in a pool since I used to swim obsessively to try to lose weight when I was in the grip of bulimia.

So it will be a weekend of firsts and implementing some beautiful changes, please God.

Wishing you all good things this weekend.

Ginny xxx

 

Exhausted unrest

I am very frustrated that basic activities are taking so much of my strength and taking a massive amount of planning.

Just going out is exhausting. I’m desperately needing more time to rest physically. Also, desperately wanting more time to properly order my home and take care of it. I have had a constant stream of appointments and commitments that I’m struggling through, feeling more and more frustrated by exhaustion, mobility problems, pain I can’t cope with, and anger with myself and unrest about my home being disordered and messy.

There are a couple of friends I really want to spend time with or do things for. I’m scared of taking from others and not giving back. Yet meeting someone, or going to their house, or cooking a meal for them, totally wipe me put afterwards for days after. I think that’s through a mixture of my pain and pushing myself too far physically, and my anxiety and the voices and feeling overwhelmed in a sensory way. Talking, others’ emotions, noise, new places, everything happening around me, can be just too much coming in to cope. Sometimes I think I have sensory processing disorder or at least sensory processing difficulties!

All this leads to despair, being cut off, and being unable to give thanks or try to open my heart to learn gratitude. I need to make a change. I don’t know what.

Ginny xxx

Furthest away from those closest

[Begun writing yesterday 30th December]

I’m really sad, angry, lonely and hurting. I feel excluded, blamed, not believed, not wanted, a disappointment, right when I am trying the hardest, giving the most I can, in the most pain and most need to find some understanding; not necessarily help but simply acknowledgement and belief of what I’m experience and some love nevertheless from those closest to me whom I might hope to trust.

I’m on the journey home now after staying 3 days with my dad and step mum and I am ashamed but I could not have coped with one day more. Again and again in my flashbacks I was back to being the child with my mother and my father and the constant terror and trepidation and dread. I live the same situations over and over. I’m terrified of the next time she’ll think I’ve done, said or thought something wrong and get angry. I am exhausted from any time with my step mother and her utter insistence on her right and my wrong. Even simply talking with her and Dad, it’s as if we’re back where whatever happened I was the problem, I was the one behaving oddly, I was the one causing damage – when actually my mother was the abusive one, she could get away with anything, when I was crying for help nobody heard, nobody helped me and my father appeared to agree with her entirely. Similarly now, he can’t believe my step mother and everything she does is anything but fantastic and wonderful. I know I’ve said before, in a family situation he is utterly loyal but to the exclusion of the point of view of anyone but her, just as he was with my mother. I think that’s at least in part how I went unheard for so long when I was clearly massively distressed and when I needed his help, and when I told him what she’d done.

It was a bad enough time through all this but it has also become very clear how little my step mother believes or understands about my physical health and disabilities, how much she blames me, holds me responsible as though being ill is a choice, how annoyed and disappointed she is I don’t live up to her requirements. I’ve known for a long time how she doesn’t understand but it came home this week. It isn’t only me that it’s directed at. She shows the same attitude to my step sister over her mental health and to one of her friends who has a lot of physical health problems. It is beyond me how anyone can show as little belief or understanding of what someone is going through, as little compassion and as much blame, but then I have been ill or physically disabled most of my life so admittedly that gives me a different starting point.

She is not open to hearing what day to day life is actually like for me or even seeing it when it’s right in front of her . I don’t make a big issue about my health. I try to make sure it affects anyone else as little as possible. But when she is lecturing me about why don’t I do this or that, things are only a problem because I imagine they are, and so on and I have to try to explain eventually why I may not be able to do something, she refuses to hear and insists on her solution and gets angry if I can’t do it. When I’m physically unable to do something when I’m right there with her, for her it’s something I’m doing deliberately, it’s a real problem for other people, I “just have to do it”, I am not making enough effort… it’s like when my mother accused me of pretending not to be able to do things if I didn’t succeed academically as she required, and the resultant rejection and punishment of me is similar too.

I wrote a lot about what my step mother said to me and did which I’ve deleted because listing a load of hurts and speaking badly of someone does no good. When I was leaving, she started up again about “New Year, new you”, how everyone needs it needs to be a healthy year, we don’t want any more of this, I’ve got to be completely different  and I’ve “simply got to” make sure of that, and it’s all about positive thinking, it simply has to be mind over matter, as if it’s a choice not a number of lifelong health conditions. She loves telling me what I’ve simply got to do, always things which I literally physically or mentally cannot, so she exerts a great amount of pressure and certainty that I’m a disappointment when I can’t meet her simply-got-tos that she heaps on me even when they’re medically not possible.

In the face of all this, my father blanks me, ignores what I’m experiencing, denies what has happened or ignores what I say if I express as much as the fact that some of what she says is hurtful, to the point of refusing to answer and acting as though he has not heard or changing the subject. He literally will not hear a single thing against her, or even not 100% agreeing with her. It’s just like how he withdrew and ceased responding and cut off and rejected me and to say the least did nothing whilst my mother continued all kinds of emotional physical and sexual abuse. Then he is able to say he doesn’t know what’s happening.

***

My step mother’s growing obsession with weight and Slimming World is hard for me too. The fridge looks like a diet advert, even though it’s Christmas, brimming with vegetables and low fat yoghurt and very little else. Food is such an issue and has to be done her way. She will not stop telling me how I’ve “simply got to get healthy… simply got to prepare proper meals”. I don’t want anything to do with her diet. She has no concept of eating disorders and how hard a combination of the voices, my physical disabilities making cooking and the resulting cleaning ever so painful, and my eating disorder make it to cook. Yet she can’t see past her own obsession with vegetables, fat free, going to the gym…

***

I’m at the point of ceasing to expect anything but rejection, judgment and accusations from my step mother and from my dad, withdrawal from me and utter support of her views. At best. The glimmers of understanding I thought I had from my dad just seem like a trick now that opened me to trusting, making the inevitable return to rejection and accusations all the more painful. I will not go to stay with them again any time soon.

It would be easier for me to cease all contact with them. My step mother does not often behave as if she likes me. I often think they might well prefer me to have only infrequent contact. After all, I’m seen mainly as a problem. Morally, I don’t feel I can cease contact. I have a duty to them. I want to forgive. I can’t expect total understanding. If I ask forgiveness from God when I’ve judged other people I need to forgive them. I try not to act angrily but the hurt is much harder to control. If I did not have a dependence or need for their understanding, it would not matter to me so much. Though my father’s withdrawal and denial of my experience hurts as much as what my step mother does.

It hurts so much in my head right now.

Ginny xxx

More cards – trying out some new materials

Feeling fairly useless as I do this week, I’ve tried very hard to do a little bit each day towards creating something good. I’ve been trying out some new materials for my greetings cards – different card backs and adhesive, for example. I focused on making photo cards as a friend had particularly requested some. She likes simple, un-frilly, photographic designs. It’s only recently I’ve started using my photos in my cards (usually I use decoupage, collage and similar) so I need to perfect my technique – a lot!

20160816_100620.jpg

It took me ages because of the pain but I’m so happy I persevered. There’s still a lot I need to streamline but I was pleased with some of the results; even more so when I showed them to my friend today and she was delighted. She’d even like some more. It really encouraged me and made me thankful to be able to do something nice for a friend.

20160816_173326.jpg

It’s helpful for me as well to make them for friends and get honest feedback so that I can improve and see what kind of designs are popular.

It’s a long range goal at present but one day I’d like to take part in a craft fair selling some of my creations. I think it would be hard for it to be truly profitable financially once my time is taken into account – doing it with the precision and finish I want to is labour-intensive – but I’d get a lot of enjoyment from it. Letter-writing is another favorite of mine though I don’t do as much as I used to as writing can be painful at present. Knowing that sending and receiving cards and letters can bring people lots of pleasure, I’d enjoy selling affordable cards. Many of those available in shops locally are incredibly expensive, maybe over £3 or even over £4 each, and that’s just too much for most people, especially once postage is factored in, and puts people off writing to friends and family.

20160816_100257.jpg

This year I hope to have time to make Christmas cards too.

Ginny xxx

The pain is no longer numbing

I’m finding this physical crash really hard. I feel useless. I’m scared by the pain though I don’t know exactly why. I can’t face going outside. I don’t feel safe. At home feels slightly safer. Outside is too much and I’m tired so quickly. I’m not frustrated, I don’t think, but I do feel sad and the pain is scaring me. I don’t know why. Nothing bad is going to happen just because of the pain. What am I scared of exactly? I don’t know.

I’m sure when things were this bad last time, a few years ago, I dealt with it “better”. I got on with things better. I stayed on more of an even keel outwardly and kept going. It didn’t affect me so much emotionally. Last time it actually shut my emotions down more. The pain felt safe. It was a bit like my self-harming. It was as if, though the pain from my physical illness wasn’t self inflicted or chosen, it absorbed some of my emotions and deadened them and the voices in my head said that was safe because it stopped me being a danger to other people. I wasn’t afraid. I didn’t feel so shaky and tired and vulnerable and exposed.

Now the pain and physical disability doesn’t seem to be swallowing up my emotional being and numbing me anymore. This must be something to do with changes the therapy is working in my mind and the fact that I have stopped self harming.

It’s quite scary to admit that this change and separation is occurring. Physical pain no longer equals safe and numb inside my head and not a danger to other people.

Now in my current physical struggle I feel the fear and vulnerability and even heightened emotions. Now I just wish someone were here to hold me. But at the same time I know I have to find out how to do this when I am on my own. Because that’s the day to day. Because I can’t ultimately depend totally on another person – in the end that puts an unfair weight on to someone else and puts me at risk if I can only go on depending on someone else every moment needing them always to protect me, allow me to to feel, allow me safety…. I don’t mean that I want to be isolated or want to reject other people. I really don’t; I long for the opposite. Just I meanthat I have to learn how to exist and experience physically and mentally for myself. This probably doesn’t make much sense yet. I’ll try to explain in better in another post.

In trying to learn some kind of ability to exist alone, exist without total dependence on others, I can trust totally in the unchanging love of Our God. The God who says fear not, for I am with you; the God who loves us first so that we can learn to love Him; the God we can count on as our hope just as surely as daybreak follows the night; the God who comes into our darkest, poorest times when we are lost and delights in us as His children.  In times of pain and alone-ness His presence is often now all the clearer to me and gives me hope that even when I fail totally at simple things and fear I disappoint everyone by being able to do so little, my life is not too little for Him. He loved each one of us before He even brought us into being. That has to mean HOPE.

Ginny xxx

The freedom of the sea

This weekend I went to visit family on the Sussex coast. I’ve wanted to do this for months and been battling with fears about the journey, being away from home, how my family would find being with me and how interactions would go. I’m so pleased this time I was able to do it, with the strength God gives and the care and support of my therapy group -and my family themselves.

As I cannot stand or walk for long at all at present, I was anxious about the journey and crossing London but it went as smoothly as I could ever have hoped.

underground_overground_wombling_free

(Thanks to http://now-here-this.timeout.com/2014/04/03/photo-of-the-day-underground-overground-wombling-free/)

Sussex is a beautiful county. Here is just one of the lovely views we took in:

IMG_0508.JPG

I especially like being near the sea. It’s just 30 minutes or so from where my family live. The beaches tend to be more pebbles, rocks and shells than sand. I collected this simple stone from the beach a few years back. As well as serving as a paperweight, I like to use it as a grounding object. Something about the cool surface is soothing. It’s one of the items from my Rescue Box  though more often it’s beside me on the bookshelf rather than in the box.

20160712_211104.jpg

In Sussex it’s still quite easy to find peaceful areas of coastline where you can listen to the gulls over the chalk cliffs and the waves, feel the salty wind and run your hands over little stones smoothed and polished by their journey back and forth over the beach and in and out with each fresh tide.

15-30mm-polished-redamber-pebbles

I love walking beside the sea. I’m not looking for the baking hot days for swimming and sunbathing – not that I’ve anything against that (and being in the water can actually bring me some relief from the pain)! I like being there and letting the sea calm me and assure me of the Presence of our loving Creator. The waves and the tide soothe me and tell me of a Heart much, much greater than mine and an eternal Spirit that speaks to each of us and whispers a hope unchanging, an order in the apparent chaos, whatever storms we are facing right now. In my journey at the moment I often feel very lost and overwhelmed, like one of the little pebbles on the beach tossing in the waves, sometimes scratched and roughly sanded against other stones, feeling very insignificant. But perhaps each motion of the waves in our lives is part of our preparation and refining, it smooths and polishes us to perfection, so we no longer resemble rough stones but bright and shining jewels that delight our beloved Jesus, who sets us right in the perfect place that He needs us to be.

Ginny xxx

 

 

Is this pain real?

WARNING: this post contains brief mentions of eating disorders and self-harm.

Which is harder to deal with: physical pain and physical disability / ill health, or mental pain and distress and poor mental health? Is there a difference for you? Does one seem more real than the other?

At the moment my physical health is poor and my physical pain and limitations have been worsening fast, in particular in the last couple of weeks. Any standing or walking is painful and shaky. I need to use my walking stick again, having had 5 years or so not needing it (apart from one time for a few weeks).

Physical health problems can be tangible and visible in a way that mental health isn’t. People can see that I’m using a stick or that I need to rest often. They can’t see in the same direct way when I’m having obsessional thoughts or hearing the voices. I’ve posted before on how many people I’ve met who have Borderline or other mental health problems, feel a shame about their mental health condition and support needs and a guilt for needing help or “not being normal” or not being able to cope. Many of these people, again myself included, have physical health issues too, and the common feeling seems to be that these are more allowed and acceptable (in others’ eyes and also our own thoughts) than the mental health needs. Often that does ring true with me and I’m sad so many people find that. I’ll post on that topic more separately.

Just now I’m struggling to trust that my physical pain is real and allowed too rather than being something I’ve invented, is my fault, not real…

Physical pain is still subjective. Nobody can objectively see how much, say, my back hurts or there are weird numb sensations then burning pain in my feet. Anatomic problems can be seen and measured on scans and tests but what our experience of pain and weakness is, can’t be.

I have been desperate for more visible and concrete proofs of what I experience physically. I have some, for example, a scan has showed some degeneration in my lower spine, the GP performed various tests which diagnosed they inflammatory condition in my knees, and so on. However much of my physical struggles aren’t documented in the same way. You can’t see nerve pain or nervous system inflammation, painful joints, muscle spasms, poor regulation in the autonomic nervous system (well not directly anyway, although some tests can show disrupted adrenal or thyroid function or high white blood cell counts)…

The lack of physical, external evidence of what I’m experiencing is a real problem for me. If i let myself think on it the voices get loud. I think I must be going mad. It must be my fault. It must be my invention or my imagination. I should just get on with it and push through. I’m weak. The worst thing is the thought I must be a fake. I hate using my stick because of it even when I’m in more pain and more unstable without it. I’m deceiving everyone, the voice tells me. Look. Everyone knows. Everyone’s looking at me. Everyone’s talking about what a fake I am. They all know nothing’s wrong with me really. I’m terrified it’s all made up and I’ve faked it all without realising. I’ll never stop it but my whole life I’ll be a fake and at the end I’ll be judged and punished for it. Other voices tell me I’m doing it for attention to make people worry about me. Don’t you know how much upset you’re causing, they ask…

In the past I’ve felt I’ve deserved physical pain. That it’s safe if I have pain or cause myself pain. It means I’m being punished and suffering and that’s safe. It means I won’t be so bad. I won’t be so dangerous. I’ll be weak and that’ll be safe. That was how I thought during my anorexia. That was how getting thinner and thinner and more ill kept me safe. It is/was part of how self harming was safe too because it punished only me, just only me, stopped the evil emotions as I saw them getting out. I say “was” because I’ve managed not to self harm for a month and I’m grappling with the feelings that come to be now I’m not doing it.

The physical pain from my illnesses that I can’t control is different. It is overwhelming. It isn’t safe. It might show my badness (because I’m fake). It’s overwhelming and can feel inescapable but I feel I don’t have the right to think it’s real.

It interacts with my mental control too. When the pain is bad part of my mind freezes. I cannot be warm or present for other people. Trying to interact at all is a fight. Sometimes I want to hide and sleep. Being around anyone can be too much. I panic and want to be safe at home in my secure place. I mix up words and sounds and can’t get a simple sentence out straight. The all encompassing nature of emotions and especially anxieties and fears and psychotic thoughts increases. I feel shut tighter into the world of my Borderline.

I doubt the reality and truth of my physical and emotional experiences. The only pain I knew was real and undoubted was the pain of self harming or starving. The rest of my experience I doubt, as though the real me that’s bad really, angry, fake, deceitful, will be found out in the end, but I can’t escape from it/her. I only just realised that in writing this post. Trying to stop self harming is going to change a lot, I think.

Ginny xxxx

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.

Gynae update – almost op time

Warning gents (or anyone for whom this may be TMI! )- look away now if you wish 🙂 !

It’s almost op day.

My surgery is scheduled for this Thursday. (It was postponed by one day because of the junior doctors’ strike.)

On Friday I had the pre-op assessment, where they check things like your blood pressure, that you don’t have particular infections,  or any conditions they need to be aware of which may make anaesthesia more risky. Thankfully all went fine.

This afternoon, I’m going in for an MRI scan. I was just about to get on the bus to the hospital when I got a phonecall to say the scanner was broken and my appointment was canceled! I really put my foot down. I need to have the scan before the operation. I questioned when they booked it (after an A&E doctor and I had kept chasing!) the fact that it was so close to the operation and was assured it would be fine. After the severity of symptoms I’ve had there was no way I was going to risk the operation getting postponed because they didn’t do the scan. I don’t usually insist for things like this but today I did. They were not forthcoming at first but I’m now to go at 4.30pm and wait however long it takes for another scanner to be available. I’m just thankful it’s being done today so the op can go ahead.

On Thursday I have to go in for 7.00am. All being well I’ll stay in overnight and come home the next day. I’m so so much hoping they can do what they want to and it fixes something. They are doing exploratory surgery, they are hoping to be able to remove some of the endometriosis and they are going to insert the coil. Depending how bad the endometriosis is they may not be able to remove all of it (they think it has probably grown over the bladder because of some of my symptoms and if it has grown through the bladder they will need to do another operation). I’m really hoping they can remove what they need to and that having the coil helps prevent it returning (I’m not sure about how effective they think that’ll be) and makes my periods lighter. Taking the Pill made no difference and I have still been bleeding for 3 weeks at a time but because the coil releases the hormones in a more localised way in the womb, it’s hoped it’ll be more effective. I was not too keen on having the coil but things have got so bad now I feel I have to try it. They are not willing to consider any other treatments til I’ve tried it. I’m kind of feeling trapped by that but I am also very thankful that after 10 years + of problems, a thorough investigation is now being done.

This past month I’ve really not been great physically. I had 4 days off work because of the pain and bleeding. I could only stand up for a few minutes at a time because I was so dizzy and in so much pain. I’m still having only 2 weeks between periods and they are lasting well over the supposedly usual week. My fibromyalgia and arthritis are bad at the moment too but the gynae symptoms are having a big impact. So Thursday can’t come fast enough!

I’m grateful that I got referred to a consultant who is taking things seriously at last.

Right, time to head off to the hospital and pray that everything is in order for the scan now!

Ginny xxx