Tag: pain management

Unenchanted April

I have wanted to post but not been able to find what to write. I’m sorry it has been nearly a month. Even this post I started nearly a week ago. I don’t know quite what’s making it so hard to express how I really am.

My friend’s health continued to deteriorate. I was fighting desperately to get him help as the danger he was in increased. Everyone in a position to keep him safe seemed oblivious to tune dangers and I could see how close he was to the edge but with no professional’s help I could not do anything more than what I can as a friend and that is not enough. It’s terrifying to be the only one knowing and believing the risk and I know that sounds like I am very arrogant thinking I know better than the doctors, but time and time again now I’ve known what’s happening or going to happen, the doctors have done nothing, refused even to listen to my concerns, and the thing I’ve known will happen, happens. The toll is greater each time. He has liver damage, blood clots, he’s starving himself, he is barely even drinking anything, there’s much more I wish I could write but it’s too personal to him for me to feel I can share here.

I don’t know how to carry this knowing.

I cannot save him alone. What someone else can give you, or trying to carry on for someone else, will not ultimately be enough to keep you safe or even alive. (I know this from my own darkest times, when I’ve been irretrievably low, hurting myself and planning to end my life, and someone close to me – who didn’t know the half of it – screamed at me, look what everyone is doing for you – why isn’t this enough for you? The answer is a post for another time but I know if he continues it must not be for me, not just for me in any case, so I alone cannot save him.

I can pray. I can try to give comfort. I can try to give compassion. I can try to show I love him and that he’s a good person not as he sees a problem, a burden, someone who frightens people, is bad, is not wanted, is no good. I can try to help him find some ways to build a safe, stable home and life. We can find short times of hope, happiness and laughter together. He has an immense capacity to love others, care for them and about them, to rejoice when they are happy, to fight to help them when they are hurting and share their pain. But none of that can he do towards himself.

He may die. He may end his life. I don’t know how to hold this knowledge and all the feelings that come with it.

****

I have been in crisis myself in the last few weeks and was in hospital for a couple of days. Then I had help from the crisis team at home for a week. When crises come I still flip out and instinctive reactions and thoughts take over along with the hallucinations just as much as they ever did before I had therapy. My “little child” gets out and she really isn’t very nice sometimes. It’s scary. I feel like a failure.

***

I’m realising that my mobility has got a lot worse in the last year. I’m particularly weak physically at the moment. I was diagnosed with POTS a little while ago (a heart, blood pressure and autonomic nervous system disorder). I’ve a lot to learn on how to manage the symptoms. Being very faint, muscle spasms, digestive problems and poor circulation have been hard to deal with this month. I’m now very fortunate to be in touch with a pain clinic at the hospital and there are some good possibilities from what they can offer, so I must be hopeful.

I really will try to post more regularly again and share happier news next time.

God bless you.

Ginny xxx

 

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Update long overdue!

It is a really hectic, up and down time at the moment and I’m much overdue posting. It has been hard to gather my words. I don’t make a habit of 2am posts – certainly not the best time of day for coherent writing – but I did not get to finish this earlier and it felt important to write before a big change coming up for me in the morning.

Belatedly, wishing you good things this New Year. I think I can just about say this since it’s still January! I’m praying that positive times and opportunities come for you and God’s blessings are shown to you to encourage you each day.

January is always a strange time, cold and empty in a way, after Christmas. Right now, so much seems unsettled, in the world, for my loved ones and in my personal life. I’ve written that before not long ago and of course it has not magically changed with the new year; if anything it seems all the more apparent. I’m trying to give generously of time and resources and friendship, for example to friends in need, and that’s how we encounter Christ in every day. But I’m feeling twisted apart inside because I come up against my limitations, what I cannot give and cannot resolve.  The family in my block, both of the partners seriously ill, whose Benefits have been suspended unresolved for weeks so they have no food, heating or electricity. My friend who has already suffered terribly and now faces more surgical procedures, my friend who has been homeless for almost a year and whose life may be in danger… to the thousands on thousands of people seeking asylum, the fear taking hold giving weight to insular policies that seem to offer protection but perhaps already spiral out of control. (The Mexico border “wall” seems to me to teetering somewhere between bizarre Divergent- trilogy-esque images and more than echoes of the Cold War era eastern block policies.)

I steer away from political issues in this blog but I think this turmoil hits ever closer to home. We hope that in times of hardship we come together and hold onto what matters most but I’m starting to think a certain level of hardship and fear brings only divisions. Then again, in my faith I believe somehow this must not be true because Jesus became Man to suffer and experience everything we suffer and go through. And He is all Love. Love came here, into the darkness and despair. Nothing changes Jesus. The despair and dark and hurt didn’t change Him, didn’t change love. So Love is here, Love suffers and struggles, but isn’t extinguished, so even in the hardest times, it’s love that remains – not division and conflict . I mustn’t lose sight of that.

This post has diverged somewhat from the update I originally planned. Probably to do with the fact that it’s 2am. I’m going to try to get back on track.

Since Christmas, I feel I have not been able to catch up at all. Usually, I have a big clear out, going through cupboards and drawers and so on and decluttering. I haven’t managed this at all. I’m frustrated with myself that I can’t keep on top of the housework at all. My emotions are bubbling over and have been for some time and I feel I have no resilience to cope with straightforward things. Saying that, maybe a lot is happening at the moment. I’m about to be discharged from the personality disorders community service I’ve had therapy in for the past 2 years. I’ve been trying to find support and things I can get in place for after my discharge. This has not been easy and actually it has been quite distressing because I have been promised a lot of treatment I haven’t had and I’m left with major mental health issues unadressed. On the positive side, I have made contact with a peer support worker and Recovery Coach who are going to help me short term and I think this will be really valuable. I have also signed up for some courses at a Recovery College, which I’ll post about (and explain) next week.

My physical health is not going through a great patch just now. The cold always makes the pain worse so that’s part of the reason. I have had to give in to the fact I need a wheelchair sometimes now and I’m looking at getting a mobility scooter. At least this will help me be less isolated and take a little stress away perhaps, because I’ll be more able to take part in things outside my home, like my volunteer work.

Practically at home, I am going rapidly up the wall at the company who should be repairing my boiler. I have had problem upon problem since November and now have no heating or hot water. I feel they have handled the whole thing terribly (7 canceled appointments for a start, having to phone 6 times to arrange a very simple thing, and so on, then them accusing me falsely of missing appointments). Ggrrr!! I know this is just part of life but in the state I’m in at the moment, I can’t cope with this, and feel very frustrated with myself for that. My emotions explode out of all control. Then I get angry with myself because so many people are going through so much worse.

A close friend has serious housing issues as well as a huge number of health problems. I’m trying to be there and do what I can. Cook hot food and support him with form filling and trying to get him a support worker who could help. It is a little way I can try to help and use the knowledge I’ve gathered from my own housing issues in the past.

I’m going to stop here. Later this morning is my last group therapy session and this will be a really really hard lot of goodbyes. I’ve been writing thank-yous and goodbyes, some of the hardest cards I’ve ever had to write. I’m sure I’ll write more about this last session and ending therapy, in the coming days. At the moment I’m struggling to find the words. I’ve cried so much today.

Ginny xxx

 

 

Exercise without returning to extremes

WARNING – this post discusses weight loss and eating disorders

I saw the nurse today as I had to have an ECG. I’ve had a lot of chest pain lately which is thought to be costocondritis but the GP wanted to check my ECG again. I’ve also been potentially diagnosed with another condition but that’s a story for another time.

Whilst I was there, the nurse took my weight and height and we decided I’m going to try the exercise referral scheme again (to a different gym this time), to have support to try very gentle swimming or at least exercises in the water.

It is time for me to do something about the fact that I am really upset at how much weight I have gained in the last 2 years, through poor diet and through my medications and being very sedentary as I often can’t walk more than a very little way unaided. The weight is increasing my hate of myself and my body. Not succeeding in losing it by my familiar means over the last few months has increased this hate even more. I know this isn’t a healthy thought pattern and I know many of my “familiar means” are eating disorder behaviors. At the same time, I am now slightly overweight according to BMI recommendations, so I need to lose weight for my physical health; also I need to care for my body’s needs by eating healthful meals rather than oscillating between starving and junk food, as has become my habit through lack of money and depression. I need to try to do some kind of exercise to improve my physical strength to manage the pain from my chronic conditions better.

So I have to figure out how can I manage my situation now and the changes I need to make without plunging deeper into eating disorder thoughts? How do I start an exercise programme without using it to punish my body? How can I keep track of my weight and control my diet without returning to my totally addicted state and the ever-present revulsion at my body tipping back over into self-harm and purging?

Does anyone have any thoughts about how to lose weight and change your eating to get back to a healthy weight range, when you have a history of binge-eating and bulimia? Are there any particular resources on this topic? I know that somehow I need to address the pervasive disgust I feel towards my body and ideally I’d do that first, but it has been present most of my life and I can’t allow my weight to grow to an even more unhealthy level. Most of my life since age 3 when my abuser started to use weighing me and controlling my food as one way of punishing and shaming me, I’ve been overweight, severely underweight or plummeting or ballooning between the two. I have lost all concept of normal food intake and normal appetite.

Ginny xxx

Not my day off

Today has been demanding. It’s one of those days that seems too much to have been only one day. I got big stuff done but also I’m losing time in unsettling ways and I know I was dissociating a lot between the different tasks and meetings I had to do, slipping out of being engaged with what’s going on and what I’m feeling and struggling to come back. Nevertheless I got through quite a few challenges.

Last night I knew I needed to tidy and clean my flat. My support worker was coming today. Also I hadn’t been on top of the housework since my operation and it was bothering me more and more. Recently I’ve started to find a greater sense of order and calmness if I don’t have too many things disorganised around me. This is interesting because til now, I’ve tended towards accumulating things I don’t need and not being able to keep my house ordered, not exactly hoarding but not being able to face items and paperwork and household tasks without going into panic.

Yesterday I was very anxious about today but put some of the physical drive from the anxiety into cleaning and then went on to clearing out some of my cupboards. By late evening I’d cleared 7 big bags (between rubbish and charity shop) and set 3 more big bags of things to try to sell at a car boot sale. The fact I don’t have a car for the boot element of that plan is potentially problematic 🙂 but there are the odd few table-top, largely indoor, sales in community centres / church halls here in the summer and I’m hoping I can find one to join in.

Today was a struggle to get up. Everything hurt. Still, I got together the papers I needed to show my new support worker (more on this tomorrow), then it was off to my care coordination appointment with my CPN. This wasn’t easy to go to because, although my last appointment was okay, in the two previous appointments I’d been really distressed and felt I didn’t get heard when I was desperate and at risk. Today’s appointment was actually really good. We looked at some DBT skills and we did a review which was overdue (every 6 months or so is a review appointment). I’ve not yet felt able to discuss with my care coordinator exactly what went wrong in the difficult appointments earlier this year when everything was going to pieces. I’m scared I’d lose control and the feelings of anger and not being believed would return and I’d do bad things and be back where I was. However my care coordinator and I have managed to move forwards having 2 positive appointments. I was scared after what I’d done – how upset and angry I’d got – he wouldn’t believe me or want me anymore and they’d know how bad I am and that I didn’t deserve help. That hasn’t happened. That’s something that I don’t usually get to experience.

Straight after my care coordination I met my support worker, H., who is from a housing support charity I was referred to recently. He is going to help me sort out my benefits like Housing & Council Tax Benefit, Tax Credits and disability benefits,  as well as liaising with my landlord about the rent arrears that I got into when I lost my job last year. It was a long appointment. We went through the background to how I’d got here, financially and in terms of my health, and we looked at lots of documentation, my income and my benefit and Council Tax notices. This took a lot out of me and I came so close inside to panic and losing it and emotions shooting too high. H. was very calm and non judgemental, which helped a lot. (More on this in the next couple of days.)

Then I had to rush to my GP appointment, which was the first since I’d been very distressed and angry at the surgery a couple of weeks ago;  also the first since my operation and finding out endometriosis isn’t actually the explanation for my pain and gynae issues. I’m still working through what happened in today’s appointment. I was dreading going into the surgery because I’m still terrified of what I did and how much I lost it. I was ashamed and embarrased and knew that they probably didn’t want me around again. I knew I’d really upset and inconvenienced and disturbed people. I’d scared people. That’s the worst thing,  the harm I caused, the bad I’ve always feared getting out of me. Talking to the GP  and discussing what happened and then also talking about my physical health was really emotionally charged.  It’s hard trying to deal with a lot of uncertainties about my physical symptoms. I know not having endometriosis is a really good thing but not having any explanation for all the things I thought it explained, and the fact the doctor isn’t really interested any more in investigating what may be wrong – well, that’s hard and triggers all my fears that it’s all in my head, I’ve made it up or I’m mad, it’s my fault. …

After the GP it was off to the pharmacy with my prescription, then finally home.

It’s been quite a day. I had a soothing bath tonight. Today was the first day I could have a bath since the operation (don’t worry I promise I did still wash 😉 !). The doctor sealed the wound with dissolvable stitches so it was important not to soak them in water too soon or they could have come undone. Also it was not safe to try to get in and out of the bath whilst my mobility was further reduced with post op effects. Falling is a risk for me anyway because of the problems the fibromyalgia and arthritis cause in my legs. So, tonight was a good little relaxation and refreshment. The little things do help!

How has your day been?

Ginny xxx

 

Post op confused.com

Post op confused.com

I’m sorry for such a long silence. On Thursday last week, I had my small operation. It has taken me a few days to get back to the point of being able to write again. Anaesthetic and I are not the best of friends so the first couple of days after the op were not very nice. Now it’s good to be back! I’ve missed you all and I’m looking forward to getting caught up, both here and with your lovely blogs. I still have pain but it’s manageable.

The operation did not go in the way expected and it isn’t medically bad, but it is confusing.

The plan of the operation was to do a laparoscopy and laparotomy – look inside the womb, look outside the womb and at the surrounding organs, remove the endometriosis and insert the coil, all under general anaesthetic. (I don’t want to bore people going into too much detail as I’ve posted on this several times before, however you can read more about it here , here and here.)

I had been told for around the last 2 years that I have endometriosis and that this is what has caused the last 10 + years of heavy, really long and painful periods, bladder problems, constant pelvic pain, back pain, amongst other things. So I was expecting a big benefit of the operation to be removing the endometriosis and that therefore my symptoms would reduce or go away afterwards.

When I saw the consultant right after the operation, he said that they found no endometriosis at all. I don’t have it. It was the wrong diagnosis. They cleaned out my womb (eeek!) but found nothing wrong with my womb or the fallopian tubes. There were no cysts and no growth of cells outside the womb or onto other organs like the bladder, which they had previously been sure there would be. They did insert the coil.

I was stunned. Of course, it is really good that I don’t have endometriosis. From the reading up I have done over the last couple of years (for example, here), I know what a terrible condition it is. On the other hand, this outcome has left me really confused. It has left me without any specific explanation for my symptoms. It means I do not know whether or not I am going to get the improvement in my symptoms, especially the debilitating pain, which I had so much hoped for after the operation.

Also, I felt really stupid, fake and that I must be imagining it all. I shouldn’t have had the operation – yet again I’m a fake – my mind was screaming at me. The doctors were kind and they said it wasn’t my fault and wasn’t wrong that they did the operaiton. It was their decision to do it and my symptoms had worsened to the point that they needed to do it, if only for the exploratory purposes of finding out exactly what is going on. Endometriosis growth typically does not show up on any kind of scans – the only way to find out 100% for sure if / where it is present is to operate.

It’s a good thing they have checked out the situation. If it was essential to look inside, I almost kind of wish they’d have done it years ago rather than giving me all different kinds of medications potentially to treat the wrong thing. However, I do understand some women find that whatever the exact problem is, medications like the Pill and tranexamic acid can manage the symptoms and that’s how it’s treated, even if you can’t remove the root cause (kind of weird to try to get my head round).

Everything feels very confusing. My head is getting noisy at times with all the thoughts of being fake, having imagined it, having deceived people, specifically having deceived people into helping me and treating me. Fraud, fraud, fake, you made it all up, liar…. the voices say. When you have that struggle in your head already, having a load of “unexplained” physical symptoms that are horrible in themselves but are hidden and not able to be proved (you can’t see them on a scan, for example) is horrible and really triggering.

The doctor said that there could be a problem with my ovaries. I’m not sure exactly what problem he is thinking of. I was still reeling from the “no endometriosis” news and was still confused and foggy from the anaesthetic. I will have to check that out with my GP. The doctor also said that some women do have really heavy painful periods simply because of hormonal problems.

The coil I’ve had fitted should help with that. It’s definitely a plus that they have been able to insert the coil. All being well, I can have it for 5 years before it needs to be changed. It is good that it was done under the anaesthetic because for various reasons, some to do with the effects of the sexual abuse when I was a child, it is too difficult for the doctor and painful for me to fit it without anaesthetic. The doctor explained that the coil can take 3 – 6 months to settle in. (Seriously? 3 months? What’s it up to for goodness sake – is it popping out to buy a new 3 piece suite at Ikea? 😉 Still…) Then, it’s hoped that I will have no monthly periods, or that they will be much lighter.

This means the next step is to wait to see what happens in the coming months with the coil, and to find out what may be the issue with my ovaries. In addition, I will potentially need some more investigations. They may need to look further into what is causing my bladder issues, since it wasn’t endometriosis growths. This could be part of my fibromyalgia, or the neuropathic symptoms.

I’m also at the start of being investigated for a potential connective tissue disorder. I’ll leave that one for another post as it’s rather a long story, but I have just found out that it can contribute to a lot of gynaecological problems, as well as joint problems and pain.

Thank you so much everyone for your support in all your lovely kind comments leading up to the op. I do feel guilty now after you gave me all that support and it then turns out to be not at all the diagnosis that it was thought to be! I’m sorry. I feel really bad for posting before having been so sure it was something it wasn’t. It was what the doctors had told me it was, but I still feel bad. Your encouragement and friendship still really means a lot whatever the ultimate diagnosis and treatment is. I’m thankful.

Ginny xxx

[Image sourced from memecenter.com – with thanks]

Radox for men

This is totally off topic but it made me laugh today.

A month or so ago I bought some bubble bath gel. It was reduced to £1 – good bargain, I thought, plus it was labelled “muscle therapy” with ginseng and something-or-other… mmm, good for a nice relaxing bath after a long day at work maybe? One thing that sometimes helps with the fibromyalgia pain is warmth so sometimes I’ll have a bath when it’s bad.

Anywho…. so I’ve been using this bath gel for about a month. Only this morning, I noticed that it is labelled “for men”! How exactly did I miss that? Admittedly the label is not terribly prominent and it was in the ladies’ section of the pharmacy!

Which leaves me to wonder – have I been going round smelling like a guy for several weeks, without realising? 🙂

Ginny xx

5 Things – update

I’m sorry for the late update. Yesterday took a rather unexpected turn. If I tell you one thing to be thankful for was the nice A&E doctor, you’ll start to get the picture! :-0 🙂

I fainted at work and had so much pain I went to A&E. I wasn’t sure whether to go or not especially as this is now chronic, but work pushed for me to go.  It was the worst pain yet. It was probably the right choice to go as if things had got even worse later at home I’d only have been even more stuck and maybe ended up going anyway. As it was, they were able to give me a stronger dose of analgesics which have started to control the pain so that is really good. It took about 4 hours before I could walk slowly without feeling so dizzy I thought I’d faint again. I got discharged home in the late afternoon.

Roll on the surgery…

Still, I promised to update with the 5 things I’m thankful for, so here goes:

1 – That I have a caring manager and colleagues who really did seem to care more about my health than the trouble my absence would cause on a busy Saturday. How different this was from all my previous experience.

2 – The particularly caring doctor at A&E. It matters so much to feel listened to and that a plan is put in place to manage and cope better with symptoms when they can’t necessarily be cured immediately.

3 – The friend who most unexpectedly was in the area and came to bring me some grocery essentials and stayed to talk a while.  Someone caring enough to go out of their way to give practical help and give me company made a huge difference.

4 – A sea of beautiful daffodils spotted on the way to work. Pretty things are close at hand if you force yourself to look.

5 – My hot water bottle and my blanket!

Ginny xx