coping with the guilt and the sadness

I'm 37 and had a stroke 3 weeks ago. I have a young active family and everything has fallen to my husband. Prognosis is excellent and I look fine. But I'm struggling with continual headaches, dreadful fatigue, a week left side and a limp due to a badly behaved left foot. And guilt. So much guilt. And I'm concerned I'm depressed. I know I'm depressed. Has anyone got any advice about how to break this and address the guilt and see things in the light again?

Hi FB. Welcome to the forum. Three weeks is a very short while ago, so your brain will still be all over the place. We stroke survivors often look fine, but our brains have undergone major trauma. Alas, post stroke fatigue is one of the more unwelcome outcomes of a stroke. It hit me on the second day after I came home from my six weeks in hospital. All you can do is to listen to your body and rest or sleep. The headaches are due to the brain having to re-wire itself. Fear, anxiety and guilt are also common. These fade in time. My stroke was while my partner and I were on holiday and,apparently, as the ambulance was taking us to A&E, I kept apologising for what was happening,

You sound as if you are already recovering. I had to learn to walk again and also had drop foot on my left side, which dragged. I now have an FES(functional electronic stimulus) machine, which sends a current down my left calf muscle to raise my leg and help me walk,

Try to stay positive. You will need all your grit and determination, but things do improve. There are other young survivors on here who can advise about the parenting side. I wish you all the best in your recovery.Better days lie ahead!

I had my strokes at 36 with 3 kids under 4. Yes, initially it all falls to your partner, just as it would have fallen to you if he were taken ill.

Cut yourself some slack. See your GP for help with your depression (they may or may not be useful. I've been diagnosed with ptsd but there's been no actual 'help') and just gradually pick stuff back up.

My strokes were January. I was back at work (I was part time anyway) in April. Back fully on the kids in April. Driving again in May. The fatigue does settle, I've still got it a bit but in a 'I really must be in bed by 10' kind of a way rather than an 'it's 2pm and I simply cannot continue without a nap now' kind of a way.

You and your husband are a team, let him support you. Start with little bits and work your way back up to a comfortable speed.

Above all, be kind to yourself. Take care x

The continual headache was a thing for me too. Mine wore off sometime in February and comes back to visit every now and again. I've managed to work out a few things that trigger it (being somewhere very bright is one of the most frequent - I had to move desks at work because I used to face a very sunny window) And try to avoid stress - my eldest started school last week and I ended up with a 9-day headache with all the associated limb pain and tingling - which was definitively suboptimal. I was so relieved when I started to feel a bit better yesterday!

Dear F-B
Sorry to learn of your stroke but welcome to the forum. I get more tips and support from this forum than anywhere else, its really good.
Wee are not doctors, just ordinary folk sharing our experiences.
There are several Young Mums on here and they will no doubt ride to your rescue in due course.

You have survived. Many do not. You are not confined to bed nor a wheelchair whereas many are. So you are one of the chosen ones.
You have however had a stroke and your brain is permanently damaged. It is a big event. Massive.
Recovery takes time. A lot of time. Rush the recovery and you will put yourself back in hospital. So you do have to accept that you are going to be unfit for a long time.
If you start with 3 months then that will put things in context.
The fact that most of us look well is an issue. I look disgustingly fit. My therapy includes lots of gardening so I have an ace tan. The medication can also tan.

I keep a stroke diary, to monitor progress, I thoroughly recommend this.
I set myself recovery goals. With each goal having mileposts as to how I would achieve each goal. It is sensible to write this list, ideally in the back of your stroke diary.
Goals are things such as to walk to the local shops. Mileposts were to step outside. To walk to the post box etc.

The guilt, anxiety, sadness etc are likely to be substantial. At this early time your guilt sounds more than most of us. I presume you are tearful. Many of us are tearful. Do let the tears flow, they will ease in a few weeks.
Depression attacked me every day. A wave of depression each day. If it gets hold then your recovery will be delayed a lot. If you can bat it away then it will be a major benefit. If you do fall into depression then counselling and drugs can be had, but it delays everything.
I was determined not to fall to depression and so far that has worked. Smile a lot. Be positive.

I was on a par with you at three weeks. Limping, especially bad ankle, could just about walk, horrific fatigue. Irrational fears. Nightmares.
But I was so much "better" than most stroke survivors. I was walking 95% were not. I can swallow, eat and at that stage could speak just a little. So I knew I had a purpose in life, I survived, others did not. Everything improved and is still improving. Age is now working in your favour, you are likely to recover faster than me. I assume you do not smoke, take little if any booze and eat sensibly.

There is so much to learn. Just take things one at a time. You should be having NHS teams visit your home. Probably for another three weeks (?) Make the most of them. Ask and listen. I found the stroke specialist counsellor the most valuable element of the team. The physio was very effective.

And ask on here. Or just vent your feelings.
Lots of us are here for you.
Smile
Be positive

Colin

Colin,

Not everyone gets NHS home visits. I didn't have a single one. There was no physio, no stroke counsellor and no care visits.

It's difficult to compare with a description of a limp from a "misbehaving foot", but I could have written something similar when I was first discharged because messages to my right foot were clearly taking a circuitous route and so it was quite a lot behind the rest of me.

I may have been getting the wrong end of the stick but it seemed to me that the care packages were more often offered to the slightly older patients.

I hope you are doing okay OP. The guilt is awful (I actually had a TIA on my son's birthday so I was only allowed to see him for a couple of minutes just outside the ward door as kids weren't allowed on ward and I wasn't allowed off ward - I still feel guilty for that!) but mainly it passes.

Thank you all, it really helps. My husband is angry that it's happened although doesn't blame me. He and I don't always get on very well anyway. He thinks I am messy and should do more around the house and now that I can't he sees what I didn't do. But overlooks what I did do. My office is the main issue. He is furious with me. Even this morning. The fact I feel we should maybe divorce doesn't help matters.
The guilt, the sadness, the sense of responsibility is almost making me think I shouldn't be here. What do I do? My two girls would remember me but my young son probably wouldn't. I don't know where to turn. My husband regularly tells me what an amazing life he has created for me and that I don't have to work (I do though). I don't know what to do or where to turn. I have no one coming to the house. I was discharged and that was that. I'm lost.

F.B. Of course you should be here, and,as a survivor, you are meant to be here. Partners do get angry. Mine thought we both had nothing to look forward to, but this was not the case. Paradoxically, my stroke brought us closer together, for which I am grateful, but we have been together for 39 years!

Unfortunately, not every health authority, gives stroke patients enough after care, I was lucky to have six weeks support at home from the community stroke team and follow up physio at my old hospital. It might be worth phoning the Stroke Association helpline to see what they can suggest. I also live close to a Life After Stroke Centre and go there now for strength and balance classes.

Please take heart from what we have said, The only way is forwards!

Dear FB
NHS services vary from area to area. Possibly the under statement of the century.
Stroke support is generally atrocious and underfunded.
It is unfair that you don't get home support in your area.
You could try the stroke association (which is not available in my area).
I would recommend that you also ask the staff at your GP surgery, ie what support is available to you. No need for a doctor for this, the staff should be able to give you the info.
I have a local voluntary group (although I cant travel to get to it).
Try your local church. They had all sorts of contacts and they give me free relaxation classes.

Of course you should be here. You survived where many die. There is a purpose to your life, you were not saved without reason.

Look at the number of friends that have already replied to your post, Many of us struggle to think and struggle to write what we mean to write. Our brains simply do not work as they did pre stroke.
We do care.

Colin

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