Headway
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My state of mind

Where to start?

I’m struggling at the mo, SAD it’s never been so bad.

This year I’m taking a medication that means I can’t take the antidepressants that would usually be prescribed for me, so I’m struggling.

I know all the helps, that only provide temporary respite, going for a walk, exercise( which is limited to walking and swimming). Great , I hear you say, you can go swimming except at my local pool I am limited to 1 hour daily at lunchtime, this is the only time I can guarantee no children in the pool, I can’t deal with the noise otherwise, and that changes at half term too.

So you see I’ve got to fit my life around that and I am often not capable of getting there and back unless I take taxis.

So, I am an angry person at the moment, angry mainly with myself I know, I’m the one debilitated by this BI!

I find I cannot answer some posts because I know the tone of my answers would not be helpful.

I watched last night’s Horizon programme and that made me angry. Don’t get me wrong it was amazing to see what could be achieved with the right rehab. I was angry because that’s what should be available to all. There are so many people on here that would benefit from the care and attention that wonderful man got. He got it because they were obviously not short of money and he was an army, or whatever, veteran. The support is there if you can afford it!,

The NHS is never going to be able to achieve these kinds of support, I don’t even think it was ever intended to. When it was first brought in to being it was to provide basic healthcare for everyone.

There have been so many advances in medical science now I feel it is not sustainable in its present form. Plus people are living longer now with more complex challenges with their health. Plus with the migration situation our population has grown and more people have entered the system without contributing beforehand.

A contentious issue, many arguments to be had on this topic.

I have vented my spleen a little and I’m calmer now, so sorry for inflicting this on you.

Trouble is when I get like this it’s soooooo hard to move and get things done, I have so many hobbies and projects on the go there should be no excuse for inactivity, but classic depression means you can’t achieve things.

It will pass, it will pass as it has before, and no doubt will in the future.

I’ll get up now and paste the smile on my face and tell everyone I’m fine, as always.

Thank you for reading

Normal me WILL be resumed soon.

Love

Janet x

27 Replies
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and breath I understand why you get angry it is a natural emotion and its natural to want to vent have you tried writing it out? or meditation? or call the helpline

There is nothing wrong with a bit of inactivity (Im struggling to get use to it)

I don't know what to say to make you feel better, I get that rehab should be available for all but the therapist have to get paid too, Im sure the NHS can evolve and adapt over time

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Hi Bexx ,

Yes i write out my thought processes it clears my he mind when you cant sleep.

I have numerous journal starting abor 2 weeks after i left rehab.

I have one dedcated especially to my husband, all those things i could never say and he knows it is there just doesnt want to read it.

Too painful for him knowing how i struggle to return to me.

As for the inactivity, i have always been busy doing in my spare time as has my sister but we are trying to live by the words of her counsellor which are” why do you constantly have to be doing? Whats wrong with just being?”

I will leave it there

Janet xx

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Tereading your reply Bexx a day later, still all those emotions bubbling beliw the surface, i have even written to points of view within the last couple of months when we ve seen a programme that ive felt hasnt dealt with brain trauma correctly.

So i do try to get it out rather than sit on it 😬

Janet x

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get it out your system because if you ignore it it will just grow and grow until it bursts and normally its bursts at inappropriate moments

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Absolutely no need to explain yourself, no need at all. I think it's fair to say we all get angry at times with our respective situations. I know I do, I had my PIP assessment yesterday and almost killed the assessor four times!

Vent away, let it out and let it go, it's fine.

Best wishes,

Andy x

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Thanks Andy,

I know i can rely on this forum and its good just to get it all out there.

Ill carry on carrying on.

Janet x

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I see clearly and agree with your despair about NHS provision but I wouldn't hold my breath about a bright shiny future.

However I can't support you regarding immigration, as the NHS may well be given a fatal blow due to the loss of EU staff.

Hospital have to recruit abroad because we're unable to produce enough competent nurses, I say this with some authority as a friend is a senior nurse involved in recruitment and training of NHS nurses and other staff.

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Hi Sealiphone, dont get me wrong i owe my life to the NHS it came through for me when i needed it and ill be eternally grateful. The 3 weeks i needed in intensive care while i was in a cona cost them dearly.

It hasnt helped scrapping the bursaries that has prevented a lot of people changing career, who can afford the £27,000 uni fees and run an existing household. Students who have already completed their degrees and realised they should have perhaps gone into the NHS will not qualify for student loans so another lost source of recruits.

As i said lots of discussions and possible arguments to be had on this topic.

Thanks for replying

Janet x

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Yes it's far from clear cut and I hope you didn't see it a personal criticism, it appears not.

Concerning antidepressants have you had the opinion of a Neuropsychiatrist, as I'd been told it wasn't possible until a Neuropsychiatrist prescribed them.

Of course your medication may be entirely different than mine, so just a thought.

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Im fine honestly i had a longer reply but just st cancelled it!!

Janet

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Sometimes I should follow your example!!

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Mo Sealiphone you are you and you find your best way, i can offer nudges to people or examples of what works for me.

😄

Janet xx

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Hope it's a better day for you tomorrow Janet. This time of year really brings me down too so I tend to hibernate, despite folks telling me it's a waste of life.........

I hope we'll all perk up again when the days get brighter & longer and there's proper respite from this damned rain.

My Camelia's flowering ; always a promising sign. Thinking of you xx

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Hi Eileen, thanks for the reply, yes today is better.

It'll go up and down for a month or two yet, however ive plenty to keep me busy i’ll just have to get on with it.

I keep meaning to buy a camellia but only ever think of it when i see them flowering, i must buy one and get it planted. Ive 2 hellebores and a plant whose name escapes me (BI strikes again) theyll get planted soon they are outside in pots at present

Today was acupuncture so definitely in a good place at the mo.

Love Janet

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I think brain injury definitely allows the winter blues to take a firmer grip and, for me, it's down to the fatigue. I used to deliberately take on a 'mega' project at the onset of winter to distract me from the dark nights and dreary days. But nowadays I simply don't have the energy or stamina for anything other than the necessities.

Mind you, it's been a horrible month for us, with the death of my mum-in-law, and my best friend's daughter who took her own life.

It makes me think things can only get better....................?

Might have to try the acupuncture ! Good to see you've had a better day today m'dear. E. xxx

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I agree there is next to no help or support in UK for people with BI headway being the only thing in most of UK. If you say where abouts you are I would recommend a BI group I go to if you are near the area. To me the one I go to has been much better than headway and the man who set it up has been through depression so would probably be able to talk to you and help. I know depression is sort of thing only people who are or have been through it understands. Also this group encourages fitness.

I haven’t had depression but I have felt alone and lonely before finding this BI group it doesn’t help not having anyone to see or talk to. It’s easy for people to say things will get better and they probably will, but you need to be able to see how they will or can. First step is finding a group for BI then you will get to know others who can help.

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Hi Keeley thank you for your reply and offer of help,

I really am mostly fine, i get out and about most days and i dont feel way he need to attend the Headway type group.

I have 2 good friends almost round the corner, my son has returned from uni and is now working, my husband works at home at least 3 days a week. So you see as i said itsmostly tve effect s of SAD

Im almost at 6years post BI and can deal with my problems caused by it, im 65 now just frustrated that i feel 85!

So thankbyou again for your concern, by the way im in Manchester.

Janet xxx

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Frustration about the lack of support is widespread and Headway does take up national issues such as the current Right First Time campaign concerning medical assessment for benefit.

However our frustration can be more localised, such as we didn't get referred to our Neurological service, perhaps you've found GPs lacking knowledge of TBI and the support available in your area.

If you're fired up by these problems, action at a local level is a way to have a positive influence.

These are things that a local Headway can take up as a social policy issue. So if you're angry talk to your Headway coordinator to see if you can become proactive, making a claim to power can be a liberating experience.

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Ill look into that Sealiphone, my GP is fantastic, i have no issues there, i share how i deal with my issues and they are grateful for that . They admitted when i asked that i was the only 1 at that practice that had suffered encephalitis so it was a learning situation for them too.

It is a teaching practice that takes students for their GP rotation and i have offered to speak to any about BI should they want it.

I have already attended a patient awareness session run by the University of Brighton, this was more about the care aspect of patients, this was a Q/A session to raise the students awareness, run for their physiotherapy, podiatry etc students.

Janet x

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That's absolutely brilliant I applaud your bravery. Yes there are fantastic GPs out there, we just need to make it the norm, power to the TBIs!!

You've missed an opportunity I got paid to do that, we are the experts believe in yourself.

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Oh no!!!, never mind money isnt the issue 😁

J x

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I relate to what you are saying. I had so many projects and was so active before the auto accident a year and a half ago when I had a stroke and TBI that changed my life. I have too much pain and fatigue to get any of the work I would like to do and I am on antidepressants, but I am still angry and sad. People will say to be positive, and I appreciate their sentiment, but I don't know how to do that. Don't feel bad for feeling bad. You have every right.

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Hi Ecojackie, ive found acupuncture helped me with the neuropathic pain i was getting in my arms, ubfortunately it doesnt go for ever and you ou need more treatments.

I do hope the change in seasons brings some relief for you, its so miserable when you experiencing all this.

Thank you for the support

Janet x

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hey janet, i agree with you sweetness, the lure of our free nhs and good benefits system has caused a drain on everything, housing and education.

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Hi Steve

My youngest daughter is working in Berlin at the moment you wouldnt believe the bureaucracy, compare us and Germany its a whole lot easier to find your way round our work, housing and health care.. And thats not just because of the language, although she tells me there are no helpful signs in multiple languages to help!!!

We are our own worst enemies in this country. Germany is in the ge EU too!!

Janet

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Hi Janet. One simple change I made was take cbd oil ( the correct one. Not H&B) I’ve reduced full strength cocodamol x 8 and 10mg diazepam a day to no diazepam and very little painkillers. All legal too! I went to Spain to meet the guy I buy mine from to check it out

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Hi Shaun,

Its worth consideration ill mull it over, im not so bad now, ive come out the other side. So all good at the moment. Back into a routine niw the xmas break is behind us.

Hope all stays good with you

Janet x

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