Tag: fibromyalgia

Op tomorrow – and a short silence

Here we are. It’s my op tomorrow.

Surprisingly for me, until I left work today I was not feeling nervous. Then my colleagues who knew about it were all so supportive wishing me well. ..and ah yes up popped the anxiety again. Hallo there 😉

Tonight I have several things to do – check my transport for tomorrow, to see if there’s an early enough bus or if I need to get a taxi, get some groceries as I may not be able to get out for a few days after the op, text my friend who is very kindly bringing me home on Friday, call Dad, tidy up at home, pack, get myself ready….eek. But plenty to think about which is probably a good thing!

Thank you so much for your support, messages, wishes, prayers and caring. It really means a lot at the moment. I never expected to find so much friendship through blogging and I’m hugely thankful.

I imagine I won’t be able to post for a few days whilst I’m recovering. I’m sorry in advance for the silence. You are in my grateful prayers and I’ll be back in touch as soon as I can.

Ginny xxx

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

 

It just doesn’t stretch, whatever I do

I’m scared I’m so close to everything falling apart. Financially. But it feels like everything.

I got an automated voicemail message from my landlord telling me I’m to call them urgently to discuss “ways we can help you to pay your rent”. They had closed by the time I finished work so I have to wait til tomorrow to call them and find out exactly what it’s about but I know it will be about my rent arrears. I doubt they will be “helping” me pay, somehow! I know the fact of having to call them doesn’t instantly change anything but I’m really panicking.

I was struggling already today, feeling very sad after a difficult 1:1 therapy session on Monday, a friendship having broken down and a few other things. After getting this message I just wanted to crawl under my duvet, cry, shut off, everything and nothing…and the urge to cut is very strong but I’m trying to resist.

Nothing is working out. I got into arrears last year when I lost my job, wasn’t paid notice and holiday pay as expected, and my housing benefit didn’t come through for 10 weeks. Working part time I’ve been entitled to some housing benefit but my claim has been messed up, suspended, altered back and forth from start to finish and I’ve had more periods of weeks with no money coming in. I’ve been paying my rent, with great difficulty, but not able to clear the arrears.

Now they have stopped my housing benefit because my salary has increased by a few pence per hour. This leaves me unable to meet even the tightest budget. I do not have enough money to cover the bare minimun of rent, council tax, bills like electricity, telephone, prescriptions, travel to the hospital, some access to the internet and food (let alone any other expenses like buying clothes when needed, any longer distance travel, or socialising). I’ve cut back as much as I can, especially on food. I don’t make proper meals, just toast, cereal and cheap snacks. It makes me feel awful (plenty of guilt for bad fattening food) but I can’t afford anything else.

I know the arrears are my responsibility and I have to pay. I feel panic and guilt every day over them. I know that in the past when very unwell I made poor financial decisions and was irresponsible with money, which has contributed to why I don’t have savings. So has the fact that I’ve been too ill physically to work full time at several points in the last 10 years.

Part of what is so upsetting is that I am now doing all I can but I still can’t stretch to cover the tightest budget or see any way to change things. I am pushing myself as hard as I can to keep going to work. It’s very difficult mentally – and I’m sad that it is so hard to do it but that is the situation I have to accept right now. It’s very difficult physically too. The pain I’m in from the fibromyalgia, arthritis and so on has been increasing since I started and each day it gets harder to do certain things (going up and down stairs, staying on my feet for lengths of time, etc) and if it carries on it’ll get to a point the pain is too much or I can’t stand long enough or something like that. I hoped if I kept pushing I’d get better at dealing with it but that isn’t happening and instead everything is flaring up.

I really want to keep working. I’m blessed with kind and happy colleagues, a caring employer, a creative environment, varied days, lots to learn and so many good things. Psychologically this job is so much less stressful than the legal secretarial work I couldn’t cope with. There’s so much that should be positive that I don’t want to waste.

However I’m in a situation that I just can’t cover day to day living going forward let alone clear the arrears I owe. It shouldn’t be a reason to give up but when things seem to be falling apart anyway, it’s harder to keep pushing through the physical pain and mental struggle to keep working.

I feel really trapped because with the rent situation alone I think I’m going to end up losing my flat. I know the landlord, being a housing association, has given me more time with the arrears than many other landlords would. A private landlord would have thrown me out ages ago. I know that’s another way I’m fortunate. It’s my responsibility but I don’t know how I can or will be able to pay.

Even if I could clear the arrears  I don’t know how I’d pay the rent going forward. If I can’t,  I don’t know where I’d live because I have no money for a deposit to rent privately. If I went back to renting a room as a lodger my mental health would crash downhill but at this point I would have to be grateful for anything. If I lose this place and end up homeless I’d lose my job. I might anyway if my physical health keeps going down.

It’s horrible thinking even if I get evicted and lose my flat, I don’t know how I’ll change my situation. It’s horrible that trying as hard as I can to do the work I can, I’m not able to live on what I earn and I’m assessed not to be entitled to any benefits despite this. I want to work as much as I can but I’m actually in a worse situation, it appears, than if I were not working at all signed off sick. My rent and council tax would then be covered by benefits. Not that that would help with the arrears but it would at least cover rent going forward. The system says it shouldn’t happen that you are worse off working than not, but it does. I’m actually put into a situation where doing the most work I can means I’m left with not enough to live.

I was referred well over two weeks ago to an organisation that would help me sort all this out and talk to my landlord. I was supposed to have been seen by them within two weeks. I chased up as I hadn’t heard, only to find out they said they had not received my referral from the support worker. It had got lost in the secure email system somewhere,  ironically. It has been sent to them again but now they are not likely to see me til after my operation.

I have no idea what to do. There are so many “if”s and a spiraling whirl of consequences that make it feel that everything’s already falling apart.

I don’t want to make out I have it harder than the next person. I know so many people are in this situation. I know I have to deal with it. It’s a time I wish someone could catch me when I’m falling like this but I know that’s nobody’s responsibility. I’m scared and everything’s already unravelling inside.i suppose I have to try not to listen to the spirals in my head until at least after I’ve spoken to my landlord tomorrow.

Ginny xxx

I’msorry for getting so behind

I’m sorry for getting so behind on responding to comments and visiting other blogs. I owe several replies and I’m not ignoring you, I’m sorry. In the past few weeks I seem to have been almost constantly under the weather with colds / flu and my fibromyalgia has really flared up now – I’m quickly fatigued, have a lot of pain, glands inflamed etc. Together with the endometriosis it isn’t a great combination. I spent most of yesterday and today sleeping (I wasn’t well enough to go to group therapy yesterday) apart from some attempts at cleaning up my flat. I feel so useless right now.

You are in my thoughts and I’m very grateful to you for still reading when I’m so rubbish at keeping in touch. I promise I’ll get back to you as soon as possible and I’m sorry for being useless.

Ginny xxx

Not being there

In the past few weeks I have been struggling more physically with a lot of pain, exhaustion and several viruses one after the other not helping. I’m learning slowly to not get frustrated or panicked when there are things I just can’t do at the moment. This is a very slow process of learning about what I can do – it’s been over 15 years now since my physical health conditions started. It still makes me feel very useless when I compare myself with other people and see how much less I seem to manage to achieve day to day than they do and comments that bring it home, deliberate or not, hurt.

However the hardest part is feeling that I can’t be there for other people (friends, family, people I work for, and so on) in the way I would like to. At the moment I manage to work part time. Usually after work I am exhausted and dealing with too much pain to do anything else. I get behind on simple things like housework. I’m behind on replying to comments and messages on here – I’m really sorry all the more because I am grateful for the time you take to stop by and read and comment and you are all far more supportive to me than I manage to be to you. I had to stop most of the voluntary work I used to do and I feel I’m not there for my friends or family in the way I’d like to be. Most live a long way away and the journey can usually be too much, plus I can’t even write or telephone as I’d like to when I’m very low physically or mentally.

I really feel like I’m selfish and should push harder (though I know I can’t) and that I’m really failing in friendship. Even in my dreams – which have been really disturbing lately – there seems to be a theme of not being able to help people or watching bad things happen to people and screaming out but not being able to stop it and the not being able to stop it comes with a sense of horror and judgment on myself that lasts quite some time after waking.

I try to take courage from remembering that it’s not grand accomplishments that are necessary and even little actions done with love and care can be meaningful even if we don’t see how they are at the time. I don’t have a high powered or even full time job but in the work I do I can still do it with dedication and care and going that bit further to help those I’m serving (literally, since I work in a shop!).

But when it comes to not being able to be present in the way I should be for others in relationships – I’m not giving the time or the help I should in practical ways – I feel I’m failing. However much I care for someone, if I can’t do the practical things (visiting, writing, helping and being there when they need it) then aren’t I really failing, from their point of view?

I know we don’t earn a genuine friendship any more than we earn God’s love. We aren’t loved by God because of what we do or because we have earned it or made ourselves successful or good enough. We are loved, still in our weakness, because His nature is loving. The more we admit our need for Him the more He fills us with His love. The good we do is the work of His love through us and every little act and prayer we offer is this love, gives this love to other people and gives love back to Him. “We love because He loved us first.” He even says it is by this love we will be known – people will say, “see these Christians, how they love one another.” In their work with the poorest people, Mother Teresa’s nuns made it their aim not to begin by preaching but by care, love and selflessness in their actions. If someone asked them why they acted as they did, then they would speak about the Love that led them to it.

Actions aren’t what make us good or acceptable people, though I can certainly tend to feel that. They are the fruit of being loved and wanting to love. But what if I can’t do the things that are needed and expected in friendship, that bring care and support to the other person and show to them that I care? In the past I’ve even ended relationships because I’ve felt so strongly that I’m not a real friend because I can’t be there as the other person needs. Recent ways relationships (one or two in particular) have gone wrong because (I think) the other person doesn’t find anything good in the relationship and thinks I need too much, make me think this even more.

Perhaps it’s something to discuss in therapy group.

Ginny xxx

Quack quack!

Quack quack!

Just for fun – walking through the park I came across these two little ducks happily sitting there in the middle of the grass. They were quite well traveled for ducks since the river is a considerable distance away, a good 20 minutes’ walk I’d say.

Today I’m feeling a bit like a duck out of water too. I’ve got another virus (only just got rid of the last one!) and the arthritis and fibromyalgia pain is really bad. It’s a struggle at work today. As well as the pain I’m not managing to keep focused and I feel weird since I had a meeting yesterday as part of the investigation of the complaint I made about the hospital where I’m having treatment. It didn’t go badly but…I don’t know. I’ll post more about it at the weekend.

Wishing you a happy day. Time for me to quack back to work.

Ginny xx

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

A super quick question about BPD / PTSD and physical pain

This is a theme I want to come back to in a longer post. I have been meaning to write something on this for a long time. For now, a very quick question, if I may.

As well as my mental health problems, I suffer with fibromyalgia, endometriosis, chronic back pain following an injury, some degree of hypermobility and potentially now a nerve pain condition as well.

I have noticed from therapy and support groups I have attended that pain conditions and joint conditions seem to be suffered by lots of people with personality disorders, PTSD / complex PTSD and/or who have suffered abuse (often in childhood). Certainly in a group I participate in at the moment, I think a higher percentage of us suffer these physical problems than you would expect to find in a random sample of the general population, if that makes sense. I have also read a couple of articles on this theme recently.

I don’t want to push people to disclose something that feels too personal so please don’t feel any need to answer. I just wonder if anyone reading this also suffers pain conditions as well as mental health difficulties? And do you find any interaction between them eg when one is worse, another also is? Or do you feel that psychological things you have suffered have had a physical impact as well as an emotional one? If anyone did want to exchange thoughts on this I’d be really interested.

Ginny xx